Ethical Issues in Genetic Research

Learning outcome: Discuss ethical considerations in research into genetic influences on genetic influences on behaviour Neuroethics:
The word neuroethics was first used in 2003 to describe how discoveries about the brain affect everyday life situations (Gazzaniga et a. 2008) The web site of the University of Pennsylvania is a valuable source for thinking through some of the issues, for an introduction to neuroethics: http://neuroethics.upenn.edu/index.php/penn-neuroethics-briefing/overview-ofneuroethics
Neuroethics has been divided into: 1. The "what we can do" problems 2. The what we know problems

The what we can do problems:

In the first category are the ethical problems raised by advances in functional neuroimaging, psychopharmacology, brain implants and brain-machine interfaces.

Brain Imaging Cognitive Enhancement Pharmaceutical Enhancement of Mood and Related Functions Brain-machine Interfaces and Nonpharmacologic Enhancement

Make notes on two of these:

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The "what we know" problems

In the second category are the ethical problems raised by our growing understanding of the neural bases of behavior, personality, consciousness, and states of spiritual transcendence.

Responsibility Science and the Soul The Consciousness Continuum

Make notes on two of these:

Summarise of the issues raised:

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Ethics of genetic research

The gateway to the American genomics site (http://genomics.energy.gov) is a valuable source of information for identifying questions and issues concerned with genetic research and thinking through the concerns. Human genome project: http://www.ornl.gov/sci/techresources/Human_Genome/home.shtml Ethics: http://www.ornl.gov/sci/techresources/Human_Genome/elsi/elsi.shtml Behavioural genetics: http://www.ornl.gov/sci/techresources/Human_Genome/elsi/behavior.shtml Videos Genome project from X Science: http://www.youtube.com/watch?v=GWpoBUi06xM Ethics, legal and social issues concerned with the genome project: http://www.youtube.com/watch?v=gkQJ26DAxfs

Fairness of how genetic information is used

To what extent should insurance companies, employers, courts, schools, adoption agencies, and the military, for example, have access to someones personal genetic information? If you think any of their groups should have access to the information to some degree, should there be limitations on how the information is used?

Privacy and confidentiality

Who owns and controls genetic information?

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The stigmatization and psychological consequences that are caused by an individuals genetic differences
How might knowing about someones personal genetic information affect the individual and how that person is perceived and treated by others? How might genetic information affect minority group members?

Reproduction
What kind of decisions might parents make for their children if they had access to genetic information? Should there be limits to parental decision-making based on genetic information? What should be involved in the genetic counselling parents receive? Is foetal genetic testing reliable and useful? Does the use of reproductive technology have a larger societal impact?

Clinical concerns about educating health professions, patients and the public about genetic testing, including scientific limitations and social roles
How can we best prepare health care professionals for genetic technologies? How can we best prepare the public to take informed choices? As a larger societal issue, how should scientific and social risks be balanced with long-term benefits of genetic technologies?

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Uncertainties that come with testing people for potential genetic susceptibilities for complex problems, such as heart disease and mental illness that are linked to multiple genes and gene-environment interactions
Should we allow testing even when there are no known treatments? Should parents be allowed to have their children tested for mental and physical health problems that do not typically begin until adulthood? What should parents have the right to do with this information? Should other groups, such as schools an the police have access to this information? To what extent can health care professionals interpret the information accurately and reliably?

The conceptual and philosophical implications about free will and determinism, the impact of your answer on human responsibility, and ideas about health and disease.
To what extent are genes responsible for our behaviour? To what extend are people responsible for their behaviour? For example, might your answer affect attitudes toward criminals? How do we define acceptable diversity?

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What are the Main Reasons For Ethical Concerns?

1) Knowledge about role of specific genes in behaviour is limited, so researchers should be careful about making definite conclusions 2) Genetic research can be reductionist if it does not include environmental factors; genetic research is correlational and cannot make definite conclusions about risk 3) It is not certain that research such as the Human Genome project is neutral 4) There are historical examples of misuse of ethically sensitive data 5) Genetic research into complex behaviour such as intelligence is controversial be of the social meaning and significance of the term. Why Do People Attach So Much Importance to a DNA Profile? Genetic information is special because it is assumed that genes determine behaviour and are associated with personal identity. In Reality, What Does a DNA Profile Show? Genetic information can only reveal a potential risk, in the form of a genetic predisposition. Given the methodological problems involved in genetic research, particular care needs to be taken into the use and interpretation of the findings. Potential self-fulfilling prophesy. What Ethical Issues are connected to Confidentiality and Anonymity? In family and twins studies this is difficult to ensure fully. Likewise, it is difficult to maintain anonymity with rare disorders. Participants have a right to know who owns the genetic information and how it will be used in the future? If misused, genetic information may be stigmatizing, which may affect peoples ability to get jobs or insurance. For example, will it affect their insurance policy? Will it affect their employment? What Ethical Issues Surround Informed Consent and the Right to Withdraw? Participants have a right to be fully informed about: the nature of the research, it procedures, and possible results of the study. They should know how the information will be used. Genetic information may be misused to justify discrimination. Other ethical issues include the fact that research into genetic influences on behaviour could potentially pose risks to participants and genetic information could be misused. Genetic research can reveal unexpected information that could be a course of stress to participants, especially when there is a genetic predisposition, but the participant shows no sign of the disorder.

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Summary Principle of the biological level of analysis: Genes influence behaviour Has been backed up by research, However, the influence of genes on behaviour lead to certain ethical issues

Genetic determinism: Humans are predisposed for certain behaviour. Questions free will (an important assumption of our society, e.g. the legal system) However, research only supports an influence, not that behaviour is determined by genes Privacy/confidentiality issue: If our behaviour is influenced by our genes, our DNA can predict our behaviours. There is an issue whether information about our genome should be protected, for instance against employers or insurance agencies. Discrimination: If there are racial differences of DNA and the genetic influences on behaviour, there is a risk of discrimination. For instance, Caucasians are more prone for alcoholism than Asians and Asians are more prone for depression than Caucasians. May lead to a renewal of the eugenics movement Conclusion: There are many ethical surrounding research on genes and behaviour, but it can still be beneficial for society

References: CNN article, July 2000: Caution urged for brain research on violence: http://edition.cnn.com/2000/HEALTH/07/28/violent.brains/index.html Nature: 2001: Learning about addiction from the genome: http://www.nature.com/nature/journal/v409/n6822/abs/409834a0.html Human Genome Project: Behavioural Genetics http://www.ornl.gov/sci/techresources/Human_Genome/elsi/behavior.shtml Top 10 unethical psychology experiments http://listverse.com/2008/09/07/top-10-unethical-psychological-experiments/ 10psychology experiments that went horribly wrong http://brainz.org/10-psychological-experiments-went-horribly-wrong/ Newson, A.J. (2009) Depression under stress: ethical issues in genetic testing. The British Journal of Psychiatry (2009) Volume 195, 189190. http://bjp.rcpsych.org/content/195/3/189.full.pdf For more specific references & video see: http://ardinglypsychology.weebly.com/ethical-issues-in-genetic-research.htm
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Discuss ethical considerations in research into biological influences on behaviour Example Essay from Pearson Baccalaureate:
http://www.contentextra.com/bacconline/OnlineResources/PsychologyPages/Worksheets.aspx

This model answer is a guide for students in terms of structure and content. It represents aboveaverage work. [22 marks]
All psychological research needs to follow ethical guidelines. This means that researchers must inform participants about the nature of their research and obtain consent from all participants. Researchers should not deceive their participants unless revealing full information will affect the validity of their work. Participants should not be harmed physically or psychologically and they have a right to anonymity, with their results kept confidential. They should be able to withdraw from the research at any time. This essay looks at how ethical issues like these are dealt with by researchers studying at the biological level of analysis. Research at the biological level of analysis sometimes struggles to follow the guidelines above. The most important problem is that in order to carry out experiments which give evidence of a causeeffect relationship, researchers need to alter the biology of their participants without them knowing. This can seem unethical because it could cause harm and be deceptive. For example, Schachter and Singer (1962) injected participants with adrenalin. Although this was done in a safe amount, fully informed consent could not be obtained from the participants as is might cause demand characteristics such as the placebo effect, whereby effects are seen simply because the participant believes they have received a treatment. Thus, in many biological experiments, researchers justify the use of deception in order to keep their work valid. There are relatively few experiments like this at the biological level of analysis because some of the most important causeeffect information could only be gained by causing significant harm to the participants. For example, when researchers want to know about the role of different parts of the brain in behaviour, they would need to test theories by damaging specific locations to isolate causes and effects. Clearly it is impossible to do this, so researchers must rely on natural experiments and case studies, where the damage has already been caused and they can study possible effects. Examples of this include Sperrys (1968) work with split-brain patients and Ogdens (2005) description of the case study of Janet. In order to investigate the role of the corpus callosum in animals, it was possible to sever this link between the two hemispheres, but Sperry could not do this in humans. His work is a natural experiment because he carried it out with participants who already had their corpus callosum severed for medical reasons. Although this means that his work is ethical, it also means that his conclusions do not have as much validity as he did not manipulate the independent variable himself: this means that he could not confidently make cause effect conclusions about the role of the corpus callosum in humans. Similarly, Ogdens work with patients like Janet has revealed important information about the role of the Patricia George / Ardingly Psychology / IB BLOA / Ethical Issues

right parietal lobe in causing hemi-neglect, but case studies like that of Janet only involve the study of the effects with limited information about exactly how they are caused. Medical professionals are able to ethically gather detail about damage, but again, cannot confidently make conclusions about cause. Modern brain-imaging technology has improved researchers ability to understand what has caused the damage, as in Janets case where a CT scan showed that she had a brain tumour. The famous case study of HM similarly is ethical in terms of not causing harm, and his initials were used to preserve anonymity, but there is some confusion about exactly what caused the memory problems that researchers studied in him. In particular, it is unclear whether his problems were caused by the damage done to his hippocampus during his brain surgery to correct epilepsy or if the drugs he took for many years afterwards might have also had a role. Another group of studies that are ethical but have limited validity are quasi-experiments like Maguire et al.s (2000) study of London taxi drivers. MRI scans were carried out on drivers with a lot of experience driving in London and were compared with scans taken from the general population, looking at existing differences. A different, longitudinal experimental design is possible to study changes over time, but it would still not be possible to isolate the cause of differences between the brains of experienced drivers and inexperienced drivers without carrying out an unethical experiment. The last group of studies to consider in terms of ethical issues is research involving animals. It is an obvious solution to the problems outlined above for researchers to harm animals instead of humans. Many people feel that all animal research is unethical because the animals cannot give informed consent, but it is generally accepted as long as the animals do not suffer too much and the research is of significant benefit to humanity. For example, Myers and Sperry (1953) severed the corpus callosum of cats to investigate its role in transferring information between the left and right hemispheres. This clearly did not result in unjustifiable suffering: it gave medical professionals the confidence to repeat the procedure with humans to correct epilepsy. It could be argued, however, that the manipulation of hormones in animals such as in Beach (1974) and Young et al. (1964) causes the kind of changes to animals lives that will lead to future damage. Beachs female dogs exposed to male hormones were more likely to urinate like male dogs. If other behaviour was affected, this might prevent them living a natural life; in such cases, they may need to be euthanized. Thus, there is a range of ethical issues that researchers working at the biological level of analysis must consider. Generally, ethical considerations prevent researchers doing the kind of experimental work on humans that is necessary to confidently make causeeffect conclusions, and therefore they carry out their research using methods that do not cause damage to humans.

Patricia George / Ardingly Psychology / IB BLOA / Ethical Issues