Bioethics

Definition
The branch of biology which deals with the moral ethical religious
political and social issues raised by the advancements in the

HISTORY OF BIOETHICS
Bioethics was preceded by medical ethics, which focused
primarily on issues arising out of the physicianpatient
relationship. The ancient Hippocratic literature (which includes
but is not limited to the Hippocratic Oath) enjoins doctors to use
their knowledge and powers to benefit the sick, to heal and not to
harm, to preserve life, and to keep in the strictest confidence
information that ought not to be spread about (though precisely
what must be kept confidential is not detailed). These basic
values and principles remain an essential part of contemporary
bioethics. However, after the Second World War it became clear
that the old medical ethics was not sufficient to meet
contemporary challenges.
Unprecedented advances in medicine, including the use of
penicillin and immunizations against childhood diseases, have
saved literally millions of lives. So have open heart surgery and
cardiac catheterization, chronic hemodialysis, and organ donation.
At the same time, many of the tools of modern medicine are very
expensive, and thus out of the reach of many who might benefit
from them. Medicines success thus led to a debate about how to
pay for health care. In most industrialized countries, the provision
of health care is viewed as the responsibility of government,
comparable to the obligation to provide public education. By
contrast, in the United States many still regard payment for
health care as an individual responsibility, or at least something
that employers, not the state, should provide. Among those who
agree that some kind of national health insurance is both fair and
fiscally sound, a debate continues between egalitarians, who

insist that no care should be provided unless it is available to all

who need it, and those who favor a tiered health care system that
allows some medical services to be distributed by the market.
Medicines successes in the post-war years raised another issue:
the value of preserving life. Respirators were originally invented
for people who were expected to recover and be able to breathe
on their own. Within a short period of time they began to be used
on people in persistent vegetative states, forcing medical
professionals to ask whether this was an appropriate use of
technology. Should people who are permanently and irreversibly
unconscious be kept alive indefinitely?
A similar issue resulted from the development of neonatal
intensive care units (NICUs), which have saved the lives of many
premature babies who would have died in earlier decades. Many
of these babies go on to have normal, healthy lives, but many
face a lifetime of severe disabilities and serious health
complications. Thus, NICUs raise the question: Ought life to be
preserved regardless of the nature or quality of that life? And if
there are times when life should not be preserved, who should be
authorized to make these decisions?
During the 1960s these questions began to be debated at
academic conferences and in scholarly journals, giving birth to the
field of bioethics. In 1969 the Hastings Center in Garrison, NY, an
independent, nonpartisan, and nonprofit bioethics research
institute, was founded by Dan Callahan and Willard Gaylin to
explore fundamental and emerging questions in health care,
biotechnology, and the environment. Its journal, the Hastings
Center Report, first appeared in June 1971. In July of that year the
Kennedy Institute of Ethics at Georgetown University opened, with
two research scholars: LeRoy Walters, who soon became its
Director, and Warren Reich, who was the editor of the first edition
of the Encyclopedia of Bioethics, published in 1978.
The term bioethics was coined in the early 1970s by biologists
who brought to the publics attention two pressing issues: the
need to maintain the planets ecology, on which all life depends,

and the implications of advances in the life sciences toward

manipulating human nature. In his book,Bioethics: Bridge to the
Future, published in 1971, Van Rensselaer Potter focused on the
growing human ability to change nature, including human nature,
and the implications of this for our global future.

Ways to Talk About Moral Interests

In the history of Western ethics, there are at least four prominent
ways to talk about moral interests. One way is in terms of the
results or consequences of actions. Discussion about
consequences requires that individuals be able to give wellgrounded reasons to explain why an agent or agents should or
should not pursue the consequences of an action. Consequences
that advance interests are labeled "good," and an agent should
pursue such consequences. Providing genetic therapy to those
with conditions that can be treated is, for the most part, good,
because this promotes the interests of the parties or stakeholders
involved. Consequences that impair interests are "bad," and
should not be pursued. Genetic testing for diseases without cures
may be considered "bad" because it impairs the interests of the
parties involved by reducing the possibility of hope for a change
in health status.
Another way to talk about moral interests is in terms of a right or
rights terms that are to be distinguished from the earlier use of
"right." Here, a right is a claim to be treated in a certain way
regardless of the consequences of doing so. A right is typically
understood as a barrier that protects individual selfdetermination, which should be protected in a classical liberal
tradition such as the one found in the U.S. For example, state
legislation protecting genetic information is built on the view that
individuals have a right to the privacy or ownership of personal
information. In other words, to honor a right is the "right" thing to
do. Denial of rights is typically seen to be a violation of liberty or
freedom in a society, because a denial of rights does not allow an
individual to pursue things that he or she chooses. Unregulated
access to genetic information by, for example, employers,
insurers, and educational institutions, may lead to violations of
liberties that are considered discriminatory toward an individual

or group of individuals, as defined by disease status, race,

gender, class, and so on. In other words, to deny a right is the
"wrong" thing to do.
A third way to talk about moral interests is in terms of respect for
person. To show respect for persons is to value persons by
refraining from eliminating any of the necessary conditions of
personhood, which include life, bodily integrity, freedom to make
choices and to act upon them, and so on. For this reason, genetic
manipulations that lead to great harm in human individuals, the
species, and the biosphere, are considered "wrong."
Correspondingly, respect for persons means acting to promote the
presence of such conditions, as in the case of using genetic
manipulation to treat patients. Respect involves, then, a negative
and a positive duty toward others. It is the obligation to act in a
certain way toward a person or persons in order that the
necessary conditions of personhood may be realized. In this view,
respect is not dependent upon the rights or consent of others. In
this way, a respect-for-person appeal accommodates discussions
of moral agents who are unable to consent, such as embryos,
fetuses, and young children. This appeal is important in
discussions of cloning, for example, because a consent-based
approach is unable to accommodate entities unable to consent,
such as fertilized eggs, embryos, and future generations.
A fourth way to talk about moral interests is in terms of virtue, or
moral character. A virtue is a character trait, and Western ethics
has a long history devoted to literature that discusses what sort of
person one ought to be, and what sort of actions one ought to
perform to be the "right" sort of person. In the West, we tend to
favor someone who has the virtues of independence, motivation,
and ingenuity. The scientist pursuing a novel idea that will help
others is often applauded. Alternatively, we tend to frown on
those who are openly self-interested and greedy, as in the case of
scientists who seek fame from great discoveries solely for their
own financial well-being.
In short, ethics involves an appeal to a wide range of interests as
it justifies what ought to or should be done. The challenge in any

ethical discussion is to clarify the appeals, including one's own,

and move to develop a clear, concise, and careful argument.

Ethical Analysis and Appeal

Thinking about ethical appeals is the more challenging aspect of
ethical analysis. Appeals vary in kind and degree, and often
diverge from our own appeals. Thus, it is important to think
outside your own perspective and in terms of how others may
think. Another challenging aspect of ethical analysis is organizing
all the information that inevitably plays a role. This course offers a
guideline to organizing this kind of information in an ethical,
analytical way.
To begin with, you must get the facts straight. Good ethics is
based on good science. Bad ethics is based on bad science.
Following this, you must consider the stakeholders in a debate.
Different stakeholders often have different appeals.
1. To continue, you must map out the position of major
stakeholders, hopefully drawing from our discussions of
different accounts of moral interests.
2. Once the terrain of the ethical problem is mapped, you then
isolate what you see to be the major ethical conflict in the
problem. You will be unable to resolve all the conflicts, so
you should choose the one that is particularly troublesome in
order to move the debate along.
3. Since there is more than one way to resolve an ethical
conflict, you should consider the likely options.
4. At this point, you are prepared to take a position on the
problem. It is at this point that you spend time developing
your position by clearly and carefully stating the major
reasons for your position. This is the heart of ethical analysis,
and should command special attention.
5. Then, in order to be sure about your position, you state the
most serious criticism of your position.
6. You then follow the stated criticism with a response. No
ethical argument is perfect, but there are ones that have

fewer weaknesses than others in terms of their clrigor of

rational thinking.
In this view, ethical analysis is not very different from an
argument in science. Both involve a process of rational inquiry.
Inquiry involves posing questions. Rational inquiry involves posing
clearly formulated questions and seeking well-reasoned answers
to those questions. Both are open to revision, given new
information and arguments. Both are public, meaning that they
are accessible to other interested people and are framed in terms
that others can understand. Both illustrate how interested
humans come to knowledge, whether facts or positions, carefully
and concisely. Over the next four weeks, you will have an
opportunity to explore and practice the process of ethical analysis
within the context of a variety of genomics issues from
genetically modified food to stem cell cloning.

GENETIC TESTING AND SCREENING

ETHICS
The ethical issues arising in relation to genetic testing and
screening largely depend on the view that there is something
special about genetic information which makes it different from
other kinds of medical information. The features that make it
special are that it has implications for family members other than
the individual in question and that it is predictive and not specific
to time.
Although other kinds of medical information may share one or
more of these features to some degree, and so it might be
claimed that genetic information is not one of a kind, nevertheless
these features are important in addressing the ethical issues and
they are relevant to both testing and screening. The fact that
genetic information is shared with family members gives rise to
issues about confidentiality and sharing of information (Human
Genetics Commission, 2003). An individual may wish his/her test
results to be confidential, whereas the health professional may
consider it important that a relative has access to the information

if it is relevant to the relatives future health. There is, therefore,

an issue for the health professional as to whether to disclose or
not, if the patient is unwilling to share the information.
The predictive nature of genetic information indicates that there is
an important distinction between types of testing; whereas some
diagnose an existing condition, others may be predictive of future
health status. Testing an individual for whether he or she has a
particular disorder can be helpful either for identifying a course of
action or simply for offering relief where anxiety has been caused
by not knowing. Where predictive testing is concerned, however,
whether for predisposition to a late-onset disorder or for
susceptibility to common disease, the issues are more
complicated. Uncertainty over the accuracy of the test results and
how they are to be interpreted is an issue, as people may make
life-changing decisions on the basis of test results, perhaps
becoming fatalistic although it is not certain that they will actually
develop a condition (e.g., heart disease) or how severe it will be.
Where children are concerned, testing them for a late-onset
disorder, especially one for which there is currently no treatment
available (e.g., Huntingtons disease), may cause them positive
harm such as stigmatization (Clarke, 1998). There has also been
concern that predictive information might be used by third parties
such as insurance companies or employers to the detriment of
individuals: for example raising premiums or denying insurance or
employment to people on the basis of a higher risk of developing
a particular disorder (Nuffield Council on Bioethics, 1993;
European Group on Ethics in Science and New Technologies,
Genetic testing and screening 1612003; UK Government and
Association of British Insurers, 2005).
The third feature of genetic information mentioned, that it is not
specific to time, facilitates its long-term storage for future
analysis, as new associations and testing techniques are
discovered. This has led to the setting up of bio-banks in different
countries as research tools to enable associations to be made
between genetic factors and health status, providing information

about variation within the population (Hayryet al., 2007). These

initiatives are not typically justified on the basis of benefit to the
individual donor of a sample but on the basis of public good or
public health, as is the case in screening programs. Practice
varies, however, on the extent to which an individual participant
may expect to receive information revealed about their own
genetic constitution. Because of the disadvantages that might
accrue to people on the basis of genetic test results, some have
argued for the individuals right not to know information about
their genetic constitution, and consent to have a sample taken for
testing is thus a central ethical issue (Chadwick et al., 1997).
Questions arise both as to who may consent (e.g., in the case of
childhood testing) and as to what information is provided and how
(e.g., is some form of genetic counseling necessary?) (Nuffield
Council on Bioethics, 1993). Where longterm storage is an issue,
there are further questions about narrow or broad consent to
future uses of the sample: whether recontacting of the donor is
necessary at different stages.