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HEC Forum (2010) 22:85–116

DOI 10.1007/s10730-010-9127-4

Recent Developments in Health Care Law: Partners


in Innovation

Roberta M. Berry • Lisa Bliss • Sylvia Caley •

Paul A. Lombardo • Jerri Nims Rooker •


Jonathan Todres • Leslie E. Wolf

Published online: 20 May 2010


 Springer Science+Business Media B.V. 2010

Abstract This article reviews recent developments in health care law, focusing on
the engagement of law as a partner in health care innovation. The article addresses:
the history and contents of recent United States federal law restricting the use of
genetic information by insurers and employers; the recent federal policy recom-
mending routine HIV testing; the recent revision of federal policy regarding the
funding of human embryonic stem cell research; the history, current status, and need
for future attention to advance directives; the recent emergence of medical–legal
partnerships and their benefits for patients; the obesity epidemic and its implications
for the child’s right to health under international conventions.

R. M. Berry (&)
School of Public Policy, Georgia Institute of Technology, 685 Cherry Street,
Atlanta, GA 30332-0345, USA
e-mail: robertaberry@gatech.edu

L. Bliss  S. Caley  P. A. Lombardo  J. N. Rooker  J. Todres  L. E. Wolf


Georgia State University College of Law, PO Box 4037, Atlanta, GA 30302-4037, USA

L. Bliss
e-mail: lbliss@gsu.edu
S. Caley
e-mail: sbcaley@gsu.edu
P. A. Lombardo
e-mail: plombardo@gsu.edu
J. N. Rooker
e-mail: jnimsrooker@gsu.edu
J. Todres
e-mail: jtodres@gsu.edu
L. E. Wolf
e-mail: lwolf@gsu.edu

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Keywords The Genetic Information Nondiscrimination Act (GINA) 


Routine HIV testing  Human embryonic stem cell (hESC) research 
Advance directive  Medical-legal partnerships  Children’s health
rights and obesity

Introduction

Beneficial innovation in treatments and delivery systems is the expected norm in


health care. Sometimes our expectations are disappointed—early promise does not
pan out, unintended consequences upend our calculus of benefits to be realized—but
we renew our efforts with the expectation, justified by the long view of modern
health care, that innovation is key to progress.
Law is a partner, for better and for worse, in the health care innovation
process. Our reckoning of benefits, realized or frustrated, often includes reference
to its role. Six areas of health care law have undergone significant recent
innovation, addressed below, with significant implications for treatments and
delivery systems.
Genomic research has prompted hope for breakthrough cures and a new era of
personalized medicine and has also prompted fear regarding third-party access to
and use of personal genetic information; Paul A. Lombardo reviews the history
and contents of recent federal legislation restricting the use of genetic
information by insurers and employers and considers remaining questions. Leslie
E. Wolf notes the recent federal policy recommending routine HIV testing and its
promise for earlier administration of potentially life-saving treatment and for
reducing the transmission of HIV/AIDS, but also notes and assesses an array of
associated legal and health care issues that require careful consideration. Roberta
M. Berry examines the recent revision of federal policy regarding the funding of
human embryonic stem cell research and considers how the controversies
surrounding this research continue to evolve as science, policy, and politics
march on. Jerri Nims Rooker reflects on the impetus to the development of
advance directives and recounts their thirty-year history, the emergence of
different forms, and the need for future attention to legal and practical
impediments to their efficacy. Medical–legal partnerships are expanding our
conception of the possibilities for constructive engagement across professional
divides; Lisa Bliss and Sylvia Caley survey the recent and rapid emergence of
these partnerships and explain why and how they can benefit patients. Jonathan
Todres asks us to consider the implications of the obesity epidemic in the context
of the child’s right to health as recognized in international conventions; newly
salient health care issues in the developing world might lead us to reconcep-
tualize the meaning of this right.

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The Genetic Information Non-Discrimination Act of 2008

Paul A. Lombardo, Ph.D., J.D.

Introduction

Recent years have seen an explosion in medical information generated by


increasingly more extensive batteries of tests, the growing complexity of medical
diagnostics, and the computerization of medical records. This trend has occurred
just as public awareness has grown about the hazards, including discrimination,
stigma, or a general loss of privacy, that might face patients whose medical records
were inadvertently or intentionally made available to their employers, insurers,
families or even strangers. To a certain extent, this new sensitivity fed some of the
concerns that led to the passage of the 1996 Health Insurance Portability and
Accountability Act (HIPAA) (Health Insurance Portability and Accountability Act
of 1996). HIPAA signaled a revolution in medical practice and created a tsunami of
paperwork that has yet to dissipate. Its mandatory disclosures to patients, who for
the first time were routinely asked to consent in writing to releases of medical
information, focused unprecedented attention on patient record privacy.
But despite passage of HIPAA, unique fears were voiced by physicians,
researchers, patients and their advocates, who identified unusual perils in the
existence and storage of information gleaned specifically from genetic testing
(Billings et al. 1992). Some of that fear could be traced to extraordinary claims
made on behalf of the new technology. Commentators trumpeted the power of a
DNA sample as the source of a medically deterministic ‘‘future diary’’ that had the
power to presage health, illness and longevity for every tested person (Annas 1993).
While others noted that evidence of ill-treatment based on a person’s potential for
future illness, for example, has been limited to several anecdotes and a handful of
legal cases, the likelihood that such information would be misused in the future was
invoked regularly to justify calls for more protective legislation (Reilly 1999a, pp.
108–117). Employers, wishing to lower worker compensation costs, and insurance
companies, vying to ‘‘cherry pick’’ the most healthy clients, always made the list of
most likely culprits in the genetic privacy debates, and model laws were drafted to
address the future possibilities for misuse of genetic information (Reilly 1999b).
Some legal analysts initially interpreted the 1990 Americans with Disabilities
Act as a tool to use in the fight to forestall anticipated genetic discrimination, but as
the potential reach of that law was shortened by judicial decisions, it seemed a less
hardy shield to use against invidious treatment (Americans with Disabilities Act of
1990; Blanck and Marti 1998; Kaiser 2004). In the absence of clearly relevant
federal legislation, states began to craft their own protective measures and, as of
2007, more than 40 states had adopted laws restricting the use of genetic
information and forbidding discrimination in employment and/or various kinds of
insurance coverage, if based on data generated by genetic tests.1 The resulting
patchwork of statutes left insurers, employers, researchers and patients with

1
For a current list of relevant legislation by state, see Congressional Research Service 2008.

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confusing and often inconsistent signals about how genetic information could be
used to make employment decisions or to guide insurance underwriting practice.
Physicians felt similarly confounded: on the one hand wishing to make the best use
of genome era diagnostics, while on the other feeling hesitant lest a disclosure of
test results lead to loss of jobs or insurance benefits for patients.
As state laws proliferated, a federal enactment languished in Congress for
13 years. Louis Slaughter, a New York member of the House of Representatives
first introduced her Genetic Information Nondiscrimination Act in 1995 (see
Hudson et al. 1995). It, and several laws like it, were reintroduced in both the House
and Senate more than a dozen times before finally passing with overwhelming
bipartisan support in 2008 (Genetic Information Nondiscrimination Act of 2008).

Scope of the Law

The Genetic Information Nondiscrimination Act, or GINA, as it has already become


known, has two main parts; the first prohibits discrimination in the provision of
health insurance and makes regulations currently in place under HIPAA to protect
medical information also apply to genetic information. The second part prohibits the
use of genetic information to effect employment discrimination. The Act amends
several other existing pieces of legislation, including the Employee Retirement
Income Security Act of 1974 (ERISA), the Occupational Safety and Health Act of
1970 (OSHA), the Public Health Service Act, and the Social Security Act as it
involves Medicare (Employee Retirement Income Security Act of 1974; Occupa-
tional Safety and Health Act of 1970; Health Insurance Portability and Account-
ability Act of 1996; Public Health Service Act; Social Security Act Amendments of
1965). The law does not apply to military personnel.

Insurance Discrimination Rules Specific provisions rule out the use of genetic
information to set or adjust premiums in group or individual health plans on the
basis of genetic information and rule out requiring genetic testing as a condition of
issuing health insurance. Genetic tests that are prohibited under this law include
analyzes of DNA, RNA, or chromosomes that would allow an insurer to detect
genotypes, mutations or chromosomal changes. The term ‘‘genetic information’’
covers data generated by genetic tests on an individual or those done on family
members as well as information about diseases or disorders of family members. The
protections for patients also extend to any fetus or embryo they may be carrying as
well as any embryo that may have been generated via assisted reproductive
technologies.
The law prohibits group insurance plans from buying or collecting genetic
information from other sources to use for purposes of underwriting, and no
individual insurance policy may impose pre-existing condition exclusions that make
use of genetic information. Voluntary genetic testing for research purposes that is
already regulated by other parts of federal law is not prohibited. Insurance plans that
violate these provisions are made subject to penalties in the form of fines, levied for
each day of noncompliance with the law.

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Employment Discrimination Rules The provisions of the new law covering


employment practices parallel restrictions set out in the insurance section of the law,
and apply to employers, employment agencies, and labor organizations. In general,
any person or entity covered by the Civil Rights Act of 1964 is now protected from
discrimination in employment by GINA. Employers who refuse to hire an
employee, limit, segregate or classify employees so as to deprive them of
employment opportunities, or fire them or otherwise discriminate with respect to
compensation, terms, conditions or privileges of employment are guilty of an
unlawful employment practice.
Employers may still examine genetic material from employees to determine if,
for example, workplace toxins have caused chromosomal damage. This ‘‘genetic
monitoring’’ may only occur when employees have given voluntary written
authorization for such activities. If federal or state law requires such monitoring,
other protective procedures are prescribed, such as reporting monitoring results to
employers in aggregate non-identifiable form.
Employers and other covered entities may possess genetic information as part of
an employee medical record, but must maintain such information in separate
medical files, and treat it as a confidential medical record in accordance with the
Americans with Disabilities Act. Disclosures of that information may be made to
employees, to occupational or other health researchers (in accordance with privacy
regulations), or in response to public health investigations of certain contagious
diseases; other disclosures may also be made to comply with certain court orders.
Both private and public efforts at enforcement of GINA may be pursued
according to provisions available under the Civil Rights Act and similar federal
legislation. The law contains a specific ‘‘whistle-blower’’ provision prohibiting
retaliation against people who report violations of the law or participate in
investigations of such activity. State laws that provide greater protection than this
Act may still form the basis for antidiscrimination enforcement by states or
individuals who have been the subject of genetic discrimination.

Remaining Questions In general, GINA extends the anti-discriminatory provisions


of existing federal law to cover ill-treatment traceable to genetic information. It does
not prevent insurance companies from setting or adjusting rates based on a person’s
existing medical conditions, whether they can be traced to genetic causes or not. And
the law does not prohibit the whole range of diagnostic tests—such as, blood tests for
cholesterol levels and the like—done as part of routine medical practice.
Critics of the Act continue to condemn its adoption of ‘‘genetic exceptionalism,’’
saying that all medical information is on some level related to genetics, and that
treating genetic information as a special brand of data is a policy pitfall (Korbkin
and Rajkumar 2008). They also note that such a law does nothing to address the
widespread gaps in insurance coverage in the population at large, and may even set
up perverse incentives in the insurance market, making already ill people even more
unlikely to get insurance coverage. All such issues shall probably remain until and
unless some plan for universal health care coverage becomes a reality (Lombardo
1996).

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New Issues in HIV Testing

Leslie E. Wolf, J.D., M.P.H.

Introduction

In September 2006, the Centers for Disease Control and Prevention (CDC)
recommended HIV testing for all Americans age 13–64 as a routine part of medical
care (Branson et al. 2006). This recommendation marked a significant change in
HIV testing policy. Prior to that, CDC recommended routine testing for specific
populations (e.g., pregnant women) and settings (e.g., sexually transmitted disease
clinics).
The CDC’s recommendations have received widespread support within the
medical community; CDC reports over 35 of 74 major medical organizations have
expressed their support for routine HIV testing (Bartlett et al. 2008). However,
others have expressed some reservations (American Civil Liberties Union 2007;
Letter 2006; Statement 2006; Graham and Kotulak 2006). Routine testing may
eliminate an important opportunity to conduct education about HIV infection and
transmission and ways of reducing risk of infection, regardless of HIV-status,
because routine testing is not accompanied by pre-test counseling, disclosures, or
specific consent. Individual medical practices, hospitals, and other health care
facilities need to determine whether to adopt the recommendations. This article
explores the recommendations in detail and highlights issues to consider.

HIV Testing Policies

When HIV testing first became available in 1985, there were few benefits to testing
and many risks. Testing positive could result in the loss of housing, employment,
insurance, and even treatment, because of widespread fear—and discrimination—
surrounding HIV/AIDS. Because HIV/AIDS was strongly associated with certain
groups—primarily homosexuals and IV drug users—in the early years of the
epidemic, testing at all could be stigmatizing. To encourage testing, special
protections were adopted for testing. Unlike most blood tests, by law, HIV testing
required specific consent, often written. Pre-test counseling often was required before
consent was obtained, and disclosure of specific information was required during the
pre-testing counseling and/or the consent process. HIV-related testing information
also received special confidentiality protections. In some cases, HIV-related
information was kept in separate sections of the medical record (Bayer and Fairchild
2006; Gostin 2006).
Despite changes in the epidemic, most notably the development of highly active
antiretroviral treatment (HAART), which has dramatically improved the prognosis
of those infected with HIV, testing policies in the United States have remained
largely unchanged (Wolf et al. 2007). In 1999, the Institute of Medicine (IOM)
published its recommendations for routine testing of pregnant women based on
study results demonstrating that mother-to-child transmission of HIV could be
significantly reduced if the mother received antiretroviral therapy during pregnancy

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and delivery and the baby received antiretroviral therapy after birth (Stoto et al.
1999). The CDC, the American College of Obstetricians and Gynecologists, and the
American Academy of Pediatrics endorsed the IOM’s recommendations (American
Academy of Pediatrics 1999; Centers for Disease Control and Prevention 2001).
Nevertheless, few states changed their HIV testing laws to allow for routine HIV
testing of pregnant women in the decade following these recommendations (Wolf
et al. 2004, 2007).
The underlying rationale for the CDC’s September 2006 recommendations to
expand routine testing to all Americans aged 13–64 is to improve public health
(Branson et al. 2006; Bayer and Fairchild 2006; Gostin 2006). The main goal is to
reduce HIV infection in the United States. The CDC estimates that about 25% of
Americans who are infected with HIV are unaware of their infection. Moreover,
those who are unaware of their infection account for over 20,000 new infections each
year (Sanders et al. 2005). There is evidence that people who learn that they are
infected with HIV modify their behavior in ways that reduce HIV transmission
(Branson et al. 2006). Accordingly, testing can affect HIV transmission. Testing may
also improve the health of those who are infected with HIV. Forty to forty-five
percent of people die within one year of learning of their HIV infection (Branson
et al. 2006). Earlier testing would allow them to receive HAART, which can both
extend life and improve its quality. Getting people who are HIV infected on HAART
might also have the effect of reducing the likelihood that they will transmit the virus.
Routine testing may increase the number of people tested for several reasons.
First, physicians may be more likely to offer the test if it is routine (Freedberg and
Samet 1999). The CDC’s recommendation is to make HIV testing more like that of
other blood tests. The patient is informed that HIV testing will be performed unless
the patient refuses (opt-out testing) (Branson et al. 2006). This process is simpler
and less time consuming for physicians than requiring pre-test counseling and
specific informed consent, in writing on a specific form. Physicians have little time
for each clinical visit. Removing this burden, including getting written consent,
removes an impediment for physicians to recommend testing (Das-Douglas et al.
2008). Making testing routine also eliminates the need to ask about—or make
assumptions about—patients’ behaviors that may place them at risk of HIV. This
may make it easier for physicians to offer testing. Being able to tell patients ‘‘I
recommend testing for all my patients’’ may also remove the stigma attached to
HIV testing and, thus, make it easier for patients to accept testing (Mimiaga
et al. 2007, pp. 113–119). Moreover, most patients accept their doctors’
recommendations. Simply raising the possibility of testing is more likely to make
it happen (Mimiaga et al. 2007; Inungu 2002).

Issues to Consider

Although there are strong public health reasons to follow the CDC’s recommen-
dations, they may not be consistent with state laws (Branson et al. 2006; Bartlett
et al. 2008; Wolf et al. 2007). Some states appear to have changed their laws to
permit routine HIV testing; however, not all states have done so (Bartlett et al.
2008). In at least one instance, the legislature stated its intention for its HIV testing

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policy to be consistent with the CDC’s recommendations, except to the extent that it
was inconsistent with the state’s informed consent requirements, which include pre-
test counseling, disclosure of specific information, and written informed consent
(R.I. GEN. LAWS 2008). Even those states that have made changes to their state laws
may retain some requirements (e.g., provision of certain information, documenta-
tion of consent) and some may apply only in certain settings (ARIZ. REV. STAT. ANN.
2008; 410 ILL. COMP. STATE. ANN. 2008). Accordingly, health care providers and
facilities need to check their state laws before changing their HIV testing policies.
Even if state law permits adoption of the CDC’s recommendations, there are
other factors to consider in deciding whether to adopt routine HIV testing.
Eliminating pre-test counseling removes an opportunity to educate patients about
HIV and risks of transmission (American Civil Liberties Union 2007; The AIDS
Institute 2006; Holtgrave 2007). In some settings and among some populations,
taking advantage of these educational opportunities may be more beneficial than the
efficiency afforded by routine testing. The CDC still recommends regular HIV
testing among those at high risk for HIV. To the extent that providers do not engage
in discussion of risks, routine testing may make it more difficult to identify those
who should test more often.
Another possible impediment to implementation of routine HIV testing is that
insurance may not cover it (Lauerman and Goldstein 2008). It may take time before
insurance plans do so. The evidence suggests that insurance coverage, and access to
regular health care providers, affects testing rates; this may be particularly true
among populations that are most affected by HIV (Bond et al. 2005; Do et al. 2005,
2006; Fernandez et al. 2002; Herndon et al. 2003; Lopez-Quintero et al. 2000; Tobin
et al. 2004).
Given the complexity of this issue, those involved in HIV testing must be
educated about the issues. Undoubtedly, they have heard about the CDC’s
recommendations. Given the prominence of these recommendations, it is important
to let health care providers know whether there have been any changes to HIV
testing policies and why. That is, if policies are changed to align with CDC
recommendations, they should know the underlying rationale for the changes and
how they will be implemented. If policies are not changed to follow the CDC
recommendations, providers should understand why the CDC’s recommendations
are not being adopted. It would also be appropriate to educate providers on how they
might seek to promote the underlying public health goals of the CDC’s
recommendations within the existing policies.

Human Embryonic Stem Cell Research: Regulatory Redux

Roberta M. Berry, J.D., Ph.D.

Introduction

Researchers in 1998 announced the discovery of a process for extracting human


embryonic stem cells (hESCs) from human embryos at the blastocyst stage, about

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five to six days after fertilization in vitro; the extraction of hESCs destroys the
embryos. Following their derivation from human embryos, hESCs can be developed
into hESC lines for use in research. These cells can self-renew indefinitely and are
‘‘pluripotent,’’ meaning that they can differentiate into any kind of cell type in the
body. These qualities render hESCs potentially very promising in studying disease
processes and in developing therapies for a range of diseases, including Parkinson’s
disease and Type-1 diabetes, and injuries (Thomson et al. 1998; The President’s
Council on Bioethics 2004, Chap. 4).
The destruction of human embryos entailed by the derivation of hESCs, on the
one hand, and the intense motivation to develop therapies for disabling or deadly
conditions on the other, render hESC research ethically controversial, generating
repeated contests over the terms of federal and state regulatory law governing the
research. Given the enduring nature of the underlying ethical issues, sharply divided
views about them, uneven distributions of views among the states, overlapping
jurisdictions of federal and state regulatory authority, and the fluidity of the basic
and clinical research surrounding hESCs and alternatives to hESCs, these contests
are likely to continue.

Regulatory Contests and Research Developments: 2000–2008

In August 2000, the National Institutes of Health (NIH) issued Guidelines to govern
the anticipated provision of federal funding for hESC research (National Institutes
of Health 2000). The 2000 Guidelines specified that funding would be available for
this research if the hESCs had been derived from human embryos created by in vitro
fertilization (IVF) for reproductive purposes and were no longer needed for that
purpose and if the IVF embryos from which the hESCs were derived had been
donated for research after informed consent by the donor(s). In keeping with the
restrictions of pre-existing federal law—the ‘‘Dickey Amendment’’—the 2000
Guidelines did not permit federal funding for the process of deriving the hESCs,
entailing the destruction of embryos; funding was available only for research on the
hESC lines developed after derivation (National Institutes of Health 2000).2 The
2000 Guidelines also ruled out federal funding for research on hESCs derived from
human embryos that had been created for research purposes, rather than for
reproductive purposes, or that had been derived from embryos created by cloning—
somatic cell nuclear transfer (SCNT)—rather than by fertilization of a human ovum
by a human sperm (National Institutes of Health 2000).
No federal funding had been extended under these 2000 Guidelines, developed
late in the administration of President Clinton, by the time President George W.
Bush assumed office and announced a new federal policy governing federal funding
of hESC research. The 2000 Guidelines were later withdrawn, after President Bush
announced that federal funding would be available for research on hESC lines that
2
The Dickey Amendment, prohibiting federal funding for ‘‘research in which a human embryo or
embryos are destroyed,’’ pre-dated the advent of hESC research. The Dickey Amendment was first
attached to the US Department of Health and Human Services appropriations bill, which provides NIH
funding, in 1996, and has been re-enacted every year since. See The President’s Council on Bioethics
(2004, Chap. 2).

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had been developed from hESCs derived from IVF embryos no longer needed for
reproductive purposes—but only for those lines in existence as of August 9, 2001,
the date of his announcement of the new policy (The President’s Council on
Bioethics, Appendix B, Remarks by President George W. Bush on Stem Cell
Research 2004; National Institutes of Health 2001). President Bush explained his
rationale for this limitation to hESC lines already in existence: federally funded
research could proceed to explore the ‘‘promise and potential’’ of hESCs derived
from human embryos for which the ‘‘life and death decision has already been
made,’’ while avoiding ‘‘crossing a fundamental moral line, by providing taxpayer
funding that would sanction or encourage further destruction of human embryos that
have at least the potential for life’’ (The President’s Council on Bioethics, Appendix
B, Remarks by President George W. Bush on Stem Cell Research 2004).
President Bush’s policy was supported by some as striking an appropriate
balance between the promise and peril of engaging in hESC research, and was
criticized by others. It was criticized for being too permissive. It allowed taxpayer
funding for research associated with the destruction of human embryos. And it
allowed funding for research on hESC lines that might not have satisfied the
informed consent requirements of the 2000 Guidelines issued during the Clinton
administration.3
Most criticisms, however, were directed at its limitation of hESC lines eligible
for federal funding. The policy allowed funding for a relatively small number of
hESC lines in existence on August 9, 2001—only 21 of which ultimately proved to
be of some research value (Stein 2009a; Murray 2001, p. A8). By limiting funding
and stigmatizing the field, critics argued that the policy would significantly impede
research toward treatments for disabling or deadly conditions without significantly
limiting the destruction of human embryos—IVF embryos that were no longer
needed for reproductive purposes were usually destined for destruction in any event
(Murray 2001, p. A8). The policy was criticized as imposing a sectarian point of
view contrary to the views of most Americans and of most users of IVF services
who would prefer to donate their embryos to research rather than donate them to
other couples or have them destroyed (Editorial 2006; Lyerly and Faden 2007).4
Stem cell research in the U.S. might lag behind that of other nations due to the
inhospitable policy environment (Levine 2008; Editorial 2006).
In response to President Bush’s policy, the U.S. Congress twice enacted
legislation, once while under Republican control and once while under Democratic
control, and both times vetoed by President Bush, that would have removed the
exclusion of funding for hESC lines created after August 9, 2001 (Stolberg 2007).
State legislative responses were mixed. Several states (California, Connecticut,
Illinois, Iowa, Maryland, Massachusetts, Missouri, New Jersey, Ohio, Rhode Island,

3
See notation of opposing views about President Bush’s policy among members of The President’s
Council of Bioethics at footnote 1, The President’s Council on Bioethics, Chap. 2, and Appendix F, The
Meaning of Federal Funding; see also discussion of a range of views in favor and opposed to President
Bush’s policy in Murray (2001).
4
For one set of polls on American public opinion, see The Pew Forum on Religion & Public Life, 2008,
indicating that 51% of Americans polled in 2008 supported hESC research. The percentage in favor
varied over the course of the polling, from a low of 43% in 2002 to a high of 57% in 2005.

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New York, and Wisconsin) enacted legislation or retained laws permitting,


regulating, and, in some cases, providing state funding for research involving
human embryos. Other states (Arizona, Arkansas, Illinois, Indiana, Louisiana,
Michigan, Nebraska, North Dakota, South Dakota, Virginia) enacted legislation or
retained existing laws imposing limitations or prohibitions on the conduct of, or the
provision of state funding for, some kinds of research involving human embryos
(National Conference of State Legislatures 2008; The President’s Council on
Bioethics, Appendix E, Legislators As Lobbyists 2004).
As the federal and state policy debates proceeded, stem cell research advanced—
some of the advances fueling the debates. While no human clinical trials were
undertaken, basic and clinical hESC research continued, supported by new federal
funding under President Bush’s policy, new state funding provided in some states,
and ongoing private funding (National Conference of State Legislatures 2008; The
President’s Council on Bioethics 2004, Chaps. 2 and 4).
Basic and clinical research on adult stem cells also continued, with mixed success
in achieving therapeutic results in humans (The President’s Council on Bioethics
2004, Chaps. 2 and 4; Gravitz 2009; Staff 2009a, b; Pollack 2009a; McNeil Jr.
2008). While the derivation of adult stem cells from non-embryonic human body
cells was uncontroversial, their potential range of beneficial applications was
limited; adult stem cells are ‘‘multipotent’’ rather than pluripotent and can develop
into only a limited range of cell types rather than all cell types (The President’s
Council on Bioethics 2004, Chap. 4).
In a development that generated significant attention in the ethical and policy
debates, researchers in 2007 reported a method for developing pluripotent stem cells
from body cells rather than from embryos—induced pluripotent stem cells (iPSCs).
Researchers used viral vectors to insert four genes into adult skin cells; insertion of
these genes returning the body cells to pluripotency (Goldman 2008; Kolata 2007).
Amidst concerns about the safety of this method, including the potential for
promoting cancer or causing mutagenesis, researchers explored alternative
approaches to creating iPSCs. A method reported in 2009 succeeded in restoring
body cells to pluripotency without employing viral vectors, eliminating the risks
associated with the earlier method (Goldman 2008; Stein 2009b). Some anticipated
that the development of iPSCs would put an end to the controversy surrounding
stem cell research; research on pluripotent stem cells could now proceed without the
need to extract hESCs from embryos. But proponents of hESC research argued that
safety concerns and uncertainties about the characteristics of iPSCs remained and
that research on all kinds of stem cells was needed to advance understanding and
make progress toward developing therapies (Abramowitz and Weiss 2007;
Krauthammer 2007; Kolata 2007; Stein 2009b; Hulse 2009; Wade 2009).

Regulatory Contests and Research Developments: 2009 Forward

Following the election of President Obama, federal funding policy returned to a stance
close to where it began with the 2000 Guidelines developed during the administration
of President Clinton. On March 9, 2009, President Obama reversed President Bush’s
policy by Executive Order (The President 2009). In his remarks accompanying

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issuance of the Executive Order, President Obama noted the opposition to President
Bush’s policy over the preceding 8 years and announced his intention to provide
vigorous support for U.S. hESC scientists. He contested the ‘‘false choice between
sound science and moral values,’’ citing his belief that ‘‘we are called to care for each
other and work to ease human suffering.’’ While acknowledging that many
‘‘thoughtful and decent people are conflicted about, or strongly oppose, this
research,’’ and their views must be respected, he concluded that most Americans
agreed that the research should proceed. He also pledged that the science would
proceed free of political interference (President Barack Obama 2009).
The NIH issued Guidelines in July 2009 applicable both to hESC research and to
some uses of iPSCs (National Institutes of Health 2009a). The 2009 Guidelines specify
detailed informed consent requirements for embryo donors; these requirements must
be satisfied if the hESC lines developed from hESCs derived from these embryos are to
be eligible for funding. For hESC lines developed prior to the effective date of the
Guidelines, an alternative approach permits case-by-case determinations of whether
the consent procedures employed accomplished the same protections for donors.5 As
under the 2000 Guidelines and under the policy established by President Bush, no
funding is available for the process of deriving the hESCs, as required by the Dickey
Amendment, or for research on hESCs derived from embryos created for research
purposes or by cloning (SCNT) (National Institutes of Health 2009a). On December 2,
2009, NIH announced the eligibility of 13 hESC lines under the 2009 Guidelines; an
additional 96 lines were under review. Over 30 NIH grants awarded in the 2009 fiscal
year involved research on hESC lines (National Institutes of Health 2009b).
President Obama’s policy was widely praised as opening the door to rapid advance
of hESC research and sooner realization of its goals—and as a vindication of science
over ideology (Grant 2009; Keim 2009a; Dolgin 2009). Others welcomed President
Obama’s policy, but argued that President Bush’s hESC research policy did not
involve a corruption of science by ideology—science must be bounded by ethical
constraints—but was mistaken in its selection of the appropriate ethical boundaries
(Harsanyi 2009; Keim 2009b). Some had hoped that the 2009 Guidelines would
permit research on hESC lines derived from a broader array of embryos—including
embryos created by methods such as cloning (SCNT)—to encourage more rapid
advance of the science and progress toward therapies (Editorial 2009; Dolgin 2009).
President Obama’s policy also was criticized for encouraging the destruction of early-
stage human life.6 Immediate responses by states policymakers in the wake of the new
federal funding policy were aimed at imposing new limitations on the conduct of
hESC research within their states (Karoub 2009; Galloway 2009; Davey 2009).
As President Obama was entering office in January 2009, hESC research entered
a new phase: clinical trials in humans. The U.S. Food and Drug Administration
approved the first clinical trial in humans of an hESC-derived therapy for the
treatment of spinal cord injury (Pollack 2009b). The news of the first U.S. human
5
The case-by-case alternative was intended, in part, to address concerns that the 21 hESC lines approved
under President Bush’s policy might be excluded from funding under the letter of the 2009 Guidelines’
new consent procedures. See Harris 2009.
6
See response to the new policy by Richard Doerflinger of the U.S. Conference of Catholic Bishops in
Vedantam (2009).

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HEC Forum (2010) 22:85–116 97

trial was followed closely by the announcement of a human trial in England of an


hESC-derived therapy for the treatment of the most common cause of blindness,
age-related macular degeneration (Henderson 2009). In the wake of the enthusiastic
response by researchers to President Obama’s new policy, other scientists struck a
note of caution about the imminence of therapies for those currently suffering—and
noted that the kinds of stem cells that ultimately will prove most useful in
developing therapies is not yet known (Neergard 2009).

Conclusion

The ethical issues that have driven policy debates at the federal and state level
endure, but the policy contest with respect to federal funding appears to have been
resolved for the foreseeable future, given the alignment of popular, Congressional,
and Presidential views favoring the current policy stance. Contests at the state level
are sure to continue, given the uneven distribution of views on hESC research
among the states. Immediate state policy responses to the new federal policy have
aimed at restricting the conduct of hESC research. But those states that have been
supportive of hESC research in the past, and that have provided funding for it, might
well aim to expand their support to hESC research not currently eligible for federal
funding—including, for example, research on hESCs derived from embryos created
for research purposes by cloning (SCNT) or other methods. The results of ongoing
research on iPSCs and on the application of hESC-derived therapies in human trials
may well influence the course of future contests over hESC regulatory policy at the
federal and state levels. The only certainty is that these contests will continue.

Advance Health Care Planning in the United States: After Three Decades, Does
Form Follow Function?

Jerri Nims Rooker, J.D.

Introduction

One of the modern challenges to developing ethical legal policies about life and
death choices in medicine is that medical innovation outpaces the development of
law. New technologies are continually being developed that expand the parameters
of what is possible in regards to developing, predicting, and sustaining human life.
The phased evolution of advance health care directives in the United States follows
the pattern of medical technology expanding and society reacting to the issues
exposed with developmental judicial decisions and legislation.
With the advent of modern life support technologies, human life can be
artificially sustained considerably longer than it can be naturally sustained (Kusmin
2006, p. 93). When an incompetent patient’s preferences regarding life support are
unknown, the medical community often wonders whether they must use life-
sustaining technologies just because they can. As the law scrambles to keep up with
medicine, the moral question, ‘‘Should we do it?’’ and the ethical question, ‘‘How do

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98 HEC Forum (2010) 22:85–116

we decide if we should do it?’’ echo at the patient bedside as life and death decisions
are made.7

The Need for Advance Health Care Planning

The 1950s and 1960s saw the advent of many modern life-sustaining medical
technologies, such as artificial feeding and hydration, mechanical ventilation,
cardiac resuscitation, and kidney dialysis (Glick 1992, pp. 13; 63 Am. Jur. Trials
2008). Subsequently, the ethical principle of patient autonomy, or self-determina-
tion, came to include not only the legal right of patients to consent to treatment, but
also the right to refuse treatment, even if that refusal results in death (Glick 1992,
pp. 268–270). Prior to this legal development, physicians typically made health care
treatment decisions for their patients, basing their decisions on what they thought
were their patients’ best interests. Physicians relied on the historical medical
principle of ‘‘above all, do no harm,’’ to determine patients’ best interests, which
often included sustaining life to the longest extent possible (Glick 1992, pp. 263,
266).
With the introduction of technologies that could artificially prolong life far
beyond its natural boundaries, the question arose whether artificially sustaining an
incompetent patient’s life furthered the patient’s best interests, or whether it was
actually harming patients by holding them ‘‘passive prisoners of medical
technology’’ (Cruzan by Cruzan v. Director 1990, p. 302). However, there was
valid concern in the medical community over civil and criminal liability for
allowing a patient to die naturally when artificial means were available to sustain
life (Schloendorff v. Society of New York Hospital 1914, p. 93; Gallanis 1999, pp.
1017–1018).
This prompted patients’ families to seek a judicial answer to the question of
whether life support measures could be removed from incapacitated patients. In
answering this question, courts repeatedly referenced the all-important issue that
resonates today, ‘‘What would the patient choose?’’ and encouraged state
legislatures to provide tools for people to indicate their preferences. Advance
health care directives were born with the goal of providing an answer to this
question, and the law began the decades-spanning process of clarifying in which
situations life-sustaining procedures may be withdrawn or withheld from incom-
petent patients.8 This process continues today in many different settings, from the
neonatal intensive care unit to the hospice facility.

7
See Scott (2000, pp. 257–258) (discussing the use of ‘ought’ to refer to ethics and the use of ‘must’ to
refer to law).
8
Advance directives address situations of those who are at one time competent and can indicate their
health care treatment preferences in the event they become incompetent due to illness or injury. Situations
involving patients who have never been competent or are children are not covered by advance directives.
See Adrian and Levitan (2006, p. 31): ‘‘A person may be incompetent for a variety of reasons and
circumstances. For example, the person may be under the age of 18, unable to understand the health care
decision, or unable to communicate a health care decision. For whatever reason, if a person is
incompetent, he or she cannot consent to medical treatment.’’

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HEC Forum (2010) 22:85–116 99

Advance Health Care Directives

Beginning with California in 1976, every state legislature has passed a version of
advance health care directive legislation (CAL. HEALTH & SAFETY CODE 1976;
Advance health care directive legislation 2009). Most states include a statutory form
(Advance health care directive legislation that includes a statutory form 2009).
These state statutes do not create the right to consent to or refuse medical treatment,
which courts have based on the common law concept of informed consent9 and
constitutional law principles of, initially, privacy10 and, more recently, liberty.11
Instead, the state laws codify examples of and parameters for how to consent to or
refuse treatment in advance of an incapacitating illness or injury in the event a
patient cannot or does not want to communicate health care choices, and they
provide immunity from liability for health care professionals who honor advance
directives.
An advance health care directive can indicate the patient’s health care treatment
preferences regarding life-sustaining procedures, designate another person to make
treatment decisions for the patient, or both. The first type of directive is most
commonly referred to as a ‘‘living will’’ or ‘‘declaration,’’ and the second type
designates a health care ‘‘agent’’ or ‘‘proxy,’’ often through a health care power of
attorney.

Health Care Treatment Preferences at the End-of-Life Forty-one state legislatures


adopted living will statutes between 1976 and 1990 (63 Am. Jur. Trials 2008,
p. 169). The primary wave of legislative enactments occurred from 1984 to 1985
with twenty states adopting living will laws (63 Am. Jur. Trials 2008, p. 171). This
corresponded with some significant events. In 1983 the President’s Commission
report on life-sustaining treatment endorsed advance directives (President’s
Commission 1983, p. 153), and in 1985 the New Jersey Supreme Court found no
distinction between ordinary and extraordinary medical treatment, allowing the
withdrawal of artificial nutrition and hydration (In re Conroy 1985).
The landscape of state advance directive legislation has changed significantly
since passage of the original laws, which allowed declarants to state in which
medical conditions they would not want to receive life support. Responding to
difficulties with living wills, including application of limited statements to a wide
range of specific medical situations, disagreements among family members, and
interpretation of the patient’s expressed preferences (63 Am. Jur. Trials 2008, pp.
187–189), states began to pass health care agent designation legislation. Naming a

9
Cruzan by Cruzan v. Director (1990 at p. 269): ‘‘At common law, even the touching of one person by
another without consent and without legal justification was a battery…This notion of bodily integrity has
been embodied in the requirement that informed consent is generally required for medical treatment.’’
Cruzan at p. 270: ‘‘The logical corollary of the doctrine of informed consent is that the patient generally
possesses the right not to consent, that is, to refuse treatment.’’
10
In re Quinlan, 355 A.2d 647 (N.J. 1976) at pp. 662–665 (unwritten constitutional right of privacy to
refuse medical treatment).
11
Cruzan by Cruzan v. Director (1990 at pp. 278–279) (constitutionally protected liberty interest
includes right to refuse hydration and nutrition).

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100 HEC Forum (2010) 22:85–116

person to make decisions helps relieve the first two problems since the agent can
make decisions based on specific medical information and is the patient’s clear
choice as her spokesperson (63 Am. Jur. Trials 2008, p. 190). However,
interpretation of the patient’s preferences remains an acute issue in end-of-life
decision making.

Designating an Agent to Make Health Care Decisions California again led the
states in adopting legislation for advance care planning in 1983 by passing the first
Durable Power of Attorney for Health Care law (63 Am. Jur. Trials 2008, p. 221,
n. 10). A flurry of state activity on this issue occurred in 1989 and 1990 with
nineteen states enacting laws (63 Am. Jur. Trials 2008, p. 222, n. 10). Currently, all
states and the District of Columbia have legislation that enables a declarant to name
another person to make health care decisions on her behalf, though the format and
terminology vary widely (Advance health care directive legislation 2009).

The National Response Immediately following the proliferation of agent desig-


nation legislation in the states, in 1990 the United States Congress passed the
original version of the federal Patient Self-Determination Act (‘‘PSDA’’). The
PSDA specifies that health care providers (e.g., hospitals, hospice programs, etc.)
must inform patients about their rights under state law to accept or refuse treatment
and to complete advance directives (Patient Self-Determination Act 2000).12
A few years later in 1993, the National Conference of Commissioners on
Uniform State Laws drafted the Uniform Health-Care Decisions Act (‘‘UHCDA’’)
(National Conference 1993). By 1993, all states had enacted some form of advance
directive statute, so the UHCDA did not provide a template for original state
legislation. Instead, it offered a solution for the lack of commonality that developed
among state laws by providing a ‘‘comprehensive’’ form and encouraging ‘‘an
enacting jurisdiction to replace its existing legislation on the subject with a single
statute’’ (National Conference 1993, Prefatory Note). In addition to providing a
comprehensive form that combines treatment choices and agent designation, the
UHCDA does not require witnesses, allows a directive to be either written or oral,
and requires a health care agent to make treatment choices according to the known
instructions and wishes of the non-communicative patient.

Current State Trends As noted by the UHCDA, confusion developed both within
and among the states due to a lack of commonality during the staged adoption of
two types of directives with different purposes and requirements. Substantive
confusion stems from a lack of understanding of and varying state policies on the
conditions that trigger reliance on the directives and from uncertainty regarding
which directive is controlling if a patient both designates an agent and indicates
treatment preferences.

12
While inclusion in the PSDA indicated federal support for advance directives, it also created confusion
as some states’ statutes allow oral advance directives, but the PSDA defines an advance directive as a
‘‘written instruction.’’ See Sabatino (2006, p. 251).

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HEC Forum (2010) 22:85–116 101

Although most states have not adopted the UHCDA, many have followed its
lead. A recent state trend aimed at reducing confusion is to combine the two goals of
advance directives in one comprehensive document with simplified and consistent
terminology, witnessing requirements, and format requirements. Half of the states
have revised their laws to combine advance directives.13 Twenty-three of these
states with combined directives include a statutory form, and the vast majority of
those forms are entitled ‘‘Advance Health Care Directive’’ or some close
derivative.14 Approximately half of the states with a combined form indicate that
the example form is optional, while the other half indicate that the example form
must be substantially followed or, in the singular instance of Oregon’s statute, that
the form must be followed exactly (OR. REV. STAT. ANN. 2009).
The other half of the states and the District of Columbia still have two separate
advance directive statutes15 or, in the case of four states, just one advance directive
statute.16 Twenty-one states and the District of Columbia have enacted separate end-
of-life treatment options and agent designation statutes; all include a statutory form
for indicating treatment preferences, and many also include a statutory form for
designating a health care agent. The statutory naming conventions for agent
designations vary widely among the states. The designation form has many different
names,17 and the person making health care decisions on the patient’s behalf is also
referred to by a variety of terms, including agent, proxy, surrogate, patient advocate,
and patient representative.
Contrary to the guidance provided by the UHCDA, almost all states require at
least two witnesses for valid execution of a directive. About half of these states
require that the witnesses are adults or at least 18 years old (Advance health care
directive legislation 2009).18 Some states ease the two-witness requirement by
allowing a notary public to witness the directive instead of two witnesses.19

13
See Advance health care directive legislation 2009: AL, AK, CA, CT, DE, GA, HI, ID, KY, ME, MD,
MN, MT, MS, NH, NM, ND, OK, OR, PA, UT, VT, VA, WV, and WY.
14
See Advance health care directive legislation that includes a statutory form 2009: Nineteen state
statutes include a form entitled ‘‘Advance Health Care Directive,’’ ‘‘Advance Health-Care Directive,’’
‘‘Advance Directive for Health Care,’’ ‘‘Health Care Directive,’’ ‘‘Advance Directive,’’ or ‘‘Advance
Medical Directive,’’ sometimes in combination with the state name (e.g. Utah Advance Health Care
Directive, Georgia Advance Directive for Health Care). Five states with combined forms offer a separate
living will or agent designation form or both in addition to the combined form (CN, MN, MO, OK, and
WV).
15
See Advance health care directive legislation 2009: AZ, AR, CO, DC, FL, IL, IN, IA, KS, MO, NE,
NV, NJ, NC, OH, RI, SC, SD, TN, TX, WA, and WI.
16
See Advance health care directive legislation 2009: LA, MA, MI, and NY.
17
See Advance health care directive legislation that includes a statutory form 2009. E.g. FLA. STAT. ANN.
§ 765.203 (West 2009) (‘‘Designation of Health Care Surrogate’’); NEV. REV. STAT. ANN. § 449.830 (West
2009) (‘‘Durable Power of Attorney for Health Care Decisions’’); 10 N.J. FORMS LEGAL & BUS. § 24:108
(West 2009) (‘‘Proxy directive—Designation of health care representative’’); and TEX. HEALTH & SAFETY
CODE ANN. § 166.164 (Vernon 2009) (‘‘Medical Power of Attorney Designation of Health Care Agent’’).
18
Id., e.g., CA, GA, OK, and VT.
19
Id., e.g., AK, CA, IA, and MS.

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Meeting the Need

The question of whether a life should be artificially sustained continues to resonate


in moral, ethical, and legal debates on life and death choices in medicine. While
moral stances on a patient refusing life-sustaining treatment continue to vary
widely, the law has relied on a patient’s right of self-determination as the primary
ethical consideration in answering the question of whether a life must be artificially
sustained.
The current status of advance health care planning in the United States includes a
minority of people completing directives and, subsequently, a minority of those
directives being honored. Three decades after the passage of the first advance
directive statute, an estimated 29% of Americans have some form of directive (The
Pew Research Center for the People & the Press 2006, pp. 1, 11, 26). Physicians
have reported that directives help in making end-of-life decisions in less than half of
the cases when they know a directive exists, and only approximately 25–35% of
physicians know when their patient in fact has a directive (Teno et al. 1997, p. 505;
Kass-Bartelmes et al. 2003, p. 2).
The core function of advance directive forms is to communicate clearly an
incompetent patient’s wishes regarding end-of-life care. States are striving to
increase understanding of patient preferences by legislative reforms aimed at
improving communication tools. Increasing physician awareness of and adherence
to a patient’s communicated preferences are equally significant needs. A large
majority of states accept directives from other states, and widespread use of a
national registry would increase access to and awareness of advance directives
(Advance health care directive legislation that accepts directives from other states
2009). However, resources are needed to create, maintain, and publicize such
endeavors. Increased legal penalties are one proposed solution for the lack of
physician observance of directives (Peters 1998, pp. 718–723), yet the threat of
liability may eclipse efforts to understand a patient’s values and interests expressed
in the limited format of a written directive. Policies that improve communication
between patients and physicians about the existence and substance of directives,
such as the PSDA, are essential for advance directive forms to fulfill their intended
function.20

Medical–Legal Partnerships to Improve the Health and Well-being


of Patients: Promising Collaborative Initiatives

Lisa Bliss, J.D. and Sylvia Caley, J.D., M.B.A., R.N.

Introduction

A child both medically and physically disabled by an undiagnosed bleeding disorder


responds favorably to expensive, standard of care treatment for hemophilia. Her

20
For an account of a successful reform effort in Georgia, see Center for Law, Health & Society 2007.

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HEC Forum (2010) 22:85–116 103

government-sponsored health plan denies coverage of the off-label use of these


life-saving medications in this child’s case.
A newly diagnosed juvenile diabetic is informed by the principal that her school
does not have personnel capable of providing insulin injections to her during the
school day. As a result, the school contends, the child must be home schooled.
A single mother makes repeated efforts to mitigate a serious mold problem in her
rent-subsidized home by making multiple calls to the landlord, complaints to the
housing authority, and more than one report to the housing code enforcement
agency. As a result of the unmitigated mold problem, her daughter is rushed by
ambulance to the Emergency Department in status asthmaticus. The child is
stabilized after a four-day stay in the intensive care unit.

The Value of Interdisciplinary Problem-Solving: Addressing Health and Other


Factors that Contribute to Well-Being

These three children share a common characteristic—all live in low-income


families. Each scenario reflects the health team’s ability to deliver excellent medical
care to the child while also highlighting the confounding effects of social problems
and poverty (see generally Guyer 2001 and Starfield 1992). These cases are but
three examples of hundreds of cases referred every year to the Health Law
Partnership (HeLP), a medical–legal collaborative based in Atlanta, Georgia (Health
Law Partnership). This partnership brings together the health-related expertise of
physicians, nurses, social workers, and other members of the health team with the
expertise of lawyers. Together these partners address holistically the multiple social
determinants that affect child health and well-being (Retkin et al. 2007; Zuckerman
et al. 2004; Tames et al. 2003).
In each of the three highlighted cases, the child received the necessary health
care. In the case of the child with an undiagnosed bleeding disorder, creative
researchers devised an innovative and effective treatment plan to restore the child’s
health. However, without the involvement of lawyers trained specifically to work
with the health team to address public health legal services issues (see Schulman
et al. 2008), access to treatment would have been denied. The child with diabetes
faced a choice between access to medically necessary insulin injections and access
to an appropriate public education that could provide a path up and out of poverty
(see Knudsen et al. 2006). To stop the revolving door that repeatedly brings children
with asthma to the Emergency Department for emergent care, triggers in the home
and in other environments frequented by children must be addressed (see Sandel and
Zotter 2000). Often, resolving the social determinants that are contributing to or
exacerbating a health problem or thwarting successful treatment of a problem
exceeds the scope of practice of members of the health team.
Lawyers working in partnership with the health team can effect solutions to
seemingly intractable problems. Through interdisciplinary problem-solving, these
children and others like them receive care for the health issues confronting them as
well as support in addressing the constellation of social conditions that may be
contributing to poor health. HeLP lawyers, working with the health team, were able
to ensure that the public health plan covered the necessary medications for the child

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with the bleeding disorder, the diabetic child was able to continue attending
school and receive insulin injections from a qualified school staff member, and the
family of the child with asthma was relocated to a new rent-subsidized home free of
mold.

Joining Legal Services and Health Care Contributes to Positive Public


Health Outcomes

Law and health-related professions are fields that touch all lives across the globe.
Professionals in these fields have joined in common cause to improve public health
and the education of lawyers and doctors in the United States and worldwide. In the
United States, formal collaborations between lawyers and health providers are
known as ‘‘medical–legal partnerships.’’ The term was coined by one of the earliest
collaborations, which developed when a pediatrician at Boston Medical Center
hired a lawyer to join his hospital clinical team to provide legal services to patients
(Wettach 2008, p. 307). Many versions of this model were soon to follow.
Currently, over 180 medical–legal partnerships operate in hospitals and clinics in
the United States (National Center for Medical–Legal Partnership 2010). Lawyers
and doctors working in tandem for the benefit of patients recognize that public
health legal services are an important tool to address the many social,
environmental, and economic factors that adversely impact the health and well-
being of low-income and minority populations—populations particularly suscepti-
ble to the negative effects of health disparities. Although many medical–legal
partnerships are connected with pediatric programs, other partnerships focus on
different patient populations. Some partnerships have developed naturally as the
result of physicians treating populations who need legal assistance via their patients’
connections to legal service providers or law school clinics. In the early days of the
AIDS crisis in the United States, infectious disease specialists welcomed the
assistance of lawyers to address complex issues of discrimination and access to care
(Schulman et al. 2008, p. 2). Many health-related law school clinics have delivered
their services for years in collaboration with providers.
While the focus patient population may differ—children, seniors, the very poor,
people living with HIV/AIDS or cancer, immigrants—the goal of addressing
problems in a collaborative, interdisciplinary manner is a basic, shared tenet of these
partnerships. Collaborative problem-solving extends the value and reach of scarce
health care resources (Boyle and Chiu 2007). While the impetus for forming a
medical–legal partnership varies from community to community and these partner-
ships may come in different forms, the missions are similar (Fleishman et al. 2006). In
the pediatric setting illustrated by the three cases above, effective medical–legal
collaborations facilitate physicians’ obligations to advocate on behalf of their young
patients when advocacy is needed to advance their patients’ health and well-being (Lo
2005, p. 235). Examples of effective interdisciplinary problem solving at the bedside
can give credible voice to demands for local, state, national, even global policy
change. Collaborative advocacy informs the policy debate.

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The Next Generation of Professionals: Educating Health Care Professionals


and Lawyers to Work Collaboratively

Medical–legal partnerships are a natural fit with clinical legal education, medical
education, and other related professional training. Although a primary goal of
medical–legal partnerships is to improve client health and well-being through the
provision of legal services, pursuing that goal in the context of interdisciplinary,
problem-solving, professional education inures to the benefit of all professions
involved.
Working with lawyers, health providers gain an understanding of the socio-
economic challenges that patients and their families face. They learn to identify the
socio-economic and legal problems that may threaten a child’s health and well-
being and to pursue appropriate referral and resolution. Public health legal service
providers learn the nature and extent of health needs in low-income populations, and
the problems doctors face when their patients’ legal problems interfere with their
ability to access proper care or to improve conditions that may be contributing to
poor health. They are also able to identify areas where the law may be used as a tool
to improve public health conditions and expand access to care for disadvantaged
populations. Legal practice also benefits from these collaborations. For example,
lawyers and legal clinicians, appreciating the value of a thorough history and
physical in providing appropriate healthcare, have adopted the practice of
performing complete public health ‘‘legal checkups.’’ In fact, the legal checkup
has been identified as a key tool in practicing preventive law (Stolle and Wexler
1997, p. 27). Identifying and addressing all of the legal issues confronting a child or
his or her family improves the odds of maintaining access to care, ensuring family
stability, and improving outcomes (Kenyon et al. 2007). Thus, the adoption of a
legal checkup allows a lawyer to practice preventive law much like a physician
practices preventive medicine.
American legal education is currently engaged in critical examination of the
nature of law training and the future of legal education (see, e.g., International
Conference on the Future of Legal Education 2008; Conference on Legal Education
at the Crossroads 2007, 2008, 2009). Two recently published books about legal
education have emphasized the importance of experiential learning and the benefits
of collaborative learning (Sullivan et al. 2007; Stuckey 2007). The development of
problem-solving skills is essential to the education of law students as well as
medical students.
All forms of experiential education involve problem-based learning; one of the
strengths of experiential education is that it gives students opportunities to practice
solving problems and to receive feedback on the quality of their efforts (Stuckey
2007, p. 170). Medical–legal partnerships that include professional training as a part
of their mission can contribute to the development of the next generation of doctors
and lawyers through collaborative, problem-based learning. Working within a
multi-disciplinary partnership to solve problems stimulates creative thinking and
fosters problem-solving skills. Encouraging the development of these skills in the
legal and health professions will positively impact the health and well-being of low-
income and minority populations. Medical–legal partnerships provide an ideal

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opportunity to challenge the legal and health professions to think broadly about
educating the professionals of the future.

Children’s Health Rights and the ‘‘Double Burden’’ of Disease

Jonathan Todres, J.D.

Newly emerging health issues frequently command both attention and resources.
Obesity and overweight have emerged as significant contributors to the incidence of
chronic disease. Recent research reports suggest that, globally, approximately 1.6
billion adults are overweight and 400 million are obese (World Health Organization
2006). Overweight adults now outnumber the hungry and malnourished individuals.
The incidence of overweight and obesity among children is also significant.
Moreover, whereas previously obesity predominantly affected wealthy nations, its
impact now extends to middle- and low-income countries. The ramifications for
developing countries are considerable, as they face the ‘‘double burden’’ of disease,
having to confront the continual effects of infectious disease and malnutrition plus
the additional burden of chronic diseases associated with obesity and overweight as
well as other issues (e.g., tobacco).
As new health burdens emerge, international health law is pressed to respond
effectively and efficiently. The World Health Organization (WHO) and other
institutions have directed recent efforts toward addressing obesity and overweight,
producing guidelines such as the Global Strategy on Diet, Physical Activity, and Health
(World Health Organization 2004). Focusing on health rights would appear to be
another avenue, currently underutilized, for responding to the double burden of disease.
This section explores some of the core international human rights law issues
raised by the double burden of disease confronting developing countries,
concentrating in particular on the capacity of the right to health to respond to the
growing impact of the double burden on children. Children are increasingly affected
by obesity and overweight, raising the need for resources to address the resulting
chronic disease-related issues while continuing the battle against high incidences of
infant mortality and other primary health care issues in children brought on by
malnutrition, HIV/AIDS, malaria, and other infectious diseases.
Human rights law recognizes that each child has the right to health, mandating
government action to ensure that right. The foremost articulation of the right is
contained in the United Nations Convention on the Rights of the Child (CRC),
the most comprehensive legally binding international children’s rights instrument
(U.N. Convention 1989). The CRC is also the most widely ratified human rights
treaty—by 193 countries; only Somalia and the United States are not party to the
treaty (see United Nations Treaty Collection 1989). Thus, with the exception of
customary international law, which is binding on all states, the rights contained in the
CRC have the broadest application of any set of legally binding individual rights.
In light of the increasing double burden of disease for developing countries, four
issues related to the child’s right to health merit attention: (1) the core principle of
every individual’s right to the highest attainable standard of health; (2) the focus of

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HEC Forum (2010) 22:85–116 107

international human rights on particular health issues; (3) the resources question;
and (4) related rights.
First, the core international human rights law provision on children’s health
establishes that each child has right to the ‘‘highest attainable standard of health’’
(U.N. Convention 1989, art. 24). Embedded in this conception of the right to health
is an acknowledgment of two variables—differences among individuals and
differences among countries (U.N. Committee on Economic, Social and Cultural
Rights 2000). Not all individuals can enjoy the same level of good health, and
human rights treaties acknowledge this circumstance. The ‘‘highest attainable’’
standard also recognizes differences in states’ resources. For example, at present,
Chad cannot afford to provide the health care services to its population that Canada
can afford and requiring the equivalent outcomes from both at this stage is
unworkable; Canada’s per capita health care expenditure is US $3,173, whereas
Chad’s is US $42 (United Nations Development Program 2007). International law
recognizes that certain countries have more limited resources and utilizes flexible
language to make health rights meaningful in all countries. For countries
confronting the double burden of disease, the obligation, then, is to ensure each
child’s highest attainable standard of health. In other words, this general principle
includes the mandate that governments address obesity and overweight, so that
children are not afflicted by chronic disease, as well as traditional health issues, such
as malnutrition and infectious diseases.
Second, the child’s right to health also contains both a right to access health care
services and needed treatment, and obligations on the state to address particular
issues affecting children, including infant and child mortality, disease and
malnutrition, and the provision of primary health care (U.N. Convention 1989,
art. 24). In these enumerated obligations, human rights law’s focus on ‘‘traditional’’
health issues affecting children—infectious disease and malnutrition—is evident.
The challenge, of course, is that for children to achieve their ‘‘highest attainable
standard of health’’ over the course of their lives, resources must be directed toward
addressing chronic disease-related issues, including obesity and overweight.
The CRC, like other human rights treaties, is monitored by a treaty body—in this
case, the Committee on the Rights of the Child—which, in addition to reviewing
states’ compliance, also develops General Comments to elucidate the meaning of
particular treaty provisions. Although General Comments have helped in the
development of human rights law jurisprudence on a number of key issues, to date
they have not addressed the emergence of chronic diseases as a major issue facing
developing countries. For example, CRC General Comment No. 4 on Adolescent
Health and Development, adopted in 2003, does not mention chronic disease issues
(U.N. Committee on the Rights of the Child 2003). The same is true for General
Comment 14 on the Right to the Highest Attainable Standard of Health of the
Committee on Economic, Social and Cultural Rights, which monitors the
International Covenant on Economic, Social, and Cultural Rights (ICESCR)
(International Covenant 1966). Thus, this gap is not specific to the jurisprudence of
the Committee on the Rights of the Child. Historically, other issues, including HIV/
AIDS-related risks, understandably have taken precedence. The absence of
discussion of chronic diseases is also likely a reflection of their recent emergence

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as major issues in middle- and low-income countries. The time has come, however,
for the international human rights treaty bodies to address these issues, as the risks
of cardiovascular disease, type-2 diabetes, and other obesity-related diseases are
increasing significantly among children.
Third, a major challenge for middle- and low-income countries in implementing
health rights is the availability of resources. As discussed above, human rights law
acknowledges variances among resources. For example, the CRC states that ‘‘[w]ith
regard to economic, social and cultural rights, States Parties shall undertake such
measures to the maximum extent of their available resources and, where needed,
within the framework of international co-operation’’ (U.N. Convention 1989, art. 4).
Resource constraints present two challenges. First, and most obviously, many
developing countries have health care budgets that are already overburdened by HIV/
AIDS and other infectious diseases (Haacker 2004). Second, the double burden
presents a particular challenge, because in many instances chronic diseases emerge
only later in life. Thus, faced with the pressing needs of malnourished children or
children afflicted by malaria versus children whose chronic diseases might only
present years later, it is understandable that states with limited resources will
prioritize the more immediate need. Failure to address obesity and overweight early,
however, means significant human and economic costs in later years, further draining
resources. For example, the WHO reports that, globally, non-communicable diseases
(including cardiovascular disease, diabetes, cancers, and obesity-related conditions)
now account for almost 60% of the deaths that occur annually (Marshall 2004). The
WHO also estimates that cardiovascular disease, diabetes, and stroke will result in
economic losses of $1.25 trillion by 2015 in just the five major developing countries,
including $557 billion in losses in China (Nugent 2008). Although economic and
social rights law accounts for resource-related challenges and, thus, allows for
progressive realization of rights over time, the double burden of disease must be
addressed early or it will likely exacerbate resource constraints over time.
Recall that the CRC contemplates that states commit resources themselves and
also ‘‘within the framework of international co-operation’’ to achieve full
implementation of all rights (U.N. Convention 1989, art. 4). Similarly, the ICESCR
requires that states parties act ‘‘individually and through international assistance and
co-operation’’ to implement the rights enshrined in that treaty (International
Covenant 1966, art. 2). Industrialized nations are implicated by this language and
must be involved in addressing the double burden confronting lower-income
countries. More work is needed by international legal scholars in elucidating the
precise obligations that industrialized countries have under international law to
ensure adequate ‘‘international assistance and co-operation’’ such that developing
countries can progressively realize each child’s right to health.
Finally, combating the double burden of disease brings to the forefront the
interrelated nature of rights. That rights are interdependent and interrelated is no
longer disputed (Commission on Human Rights 2001). Confronting both chronic
diseases and the long-standing challenges of infectious diseases and malnutrition
highlights the need to ensure all health-related rights in a holistic manner.
Therefore, in addition to implementing the right to health, states must simulta-
neously ensure children’s right to education, right to access information, right to be

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HEC Forum (2010) 22:85–116 109

free from all forms of discrimination, and related rights, so that children and youth,
working with their families and communities, can prevent disease and realize their
highest attainable standard of health. Professionals working in international health
and international human rights must ensure that programming designed to ensure
children’s health rights accounts for and addresses related rights.
International human rights law offers an important tool for developing effective
responses to the double burden of disease. Most important, it provides the legal
mandate to hold states accountable for the health status of their population. As
discussed above, however, the double burden of disease also highlights the need for
further work in the human rights arena to ensure that human rights law is fully
responsive to the emerging health law issues of the day. The double burden of
disease, therefore, should motivate the international community to strengthen
human rights law, so that, in turn, the law can serve to help ensure the well-being of
all children.

Acknowledgments Jerri Nims Rooker gratefully acknowledges the excellent research assistance
on state advance health care directive statutes provided by Heather Carter and Olga Dashevskaya.
The co-authors, whose names are listed in alphabetical order, are academic affiliates of the Georgia
State University Center for Law, Health & Society and thank the Center for its support. The Center
\http://law.gsu.edu/clhs/[ engages in interdisciplinary research, education, and community outreach to
prepare future leaders in the legal and health professions.

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