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A Vision for the Future of Genomics Research: A Blueprint for the Genomic Era

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Part V

III. Genomics to Society — Promoting the Use of Genomics to Maximize Benefits and Minimize Harms


Genomics has been at the forefront of giving serious attention, through scholarly research and policy discussions, to the impact of science and technology on society. Although the major benefits to be realized from genomics are in the area of health, as described above, genomics can also contribute to other aspects of society. Just as the HGP and related developments have spawned new areas of research in basic biology and in health, they have also created opportunities for research on social issues, even to the extent of understanding more fully how we define ourselves and each other.

In the next few years, society must not only continue to grapple with numerous questions raised by genomics, but must also formulate and implement policies to address many of them. Unless research provides reliable data and rigorous approaches on which to base such decisions, those policies will be ill-informed and could potentially compromise us all. To be successful, this research must encompass both "basic" investigations that develop conceptual tools and shared vocabularies, and more "applied," "translational" projects that use these tools to explore and define appropriate public-policy options that incorporate diverse points of view.



As it has in the past, such research will continue to have important ramifications for all three major themes of the vision presented here. We now address research that focuses on society itself, more than on biology or health. Such efforts should enable the research community to:
  • Analyze the impact of genomics on concepts of race, ethnicity, kinship, individual and group identity, health, disease, and "normality" for traits and behaviours.

  • Define policy options, and their potential consequences, for the use of genomic information and for the ethical boundaries around genomics research.
Grand Challenge III-1: Develop Policy Options for the Uses of Genomics in Medical and Non-Medical Settings

Surveys have repeatedly shown that the public is highly interested in the concept that personal genetic information might guide them to better health, but is deeply concerned about potential misuses of that information (see
www.publicagenda.org/issues/pcc_detail.cfm?issue_type=medical_research&list=7). Topping the list of concerns is the potential for discrimination in health insurance and employment. A significant amount of research on this issue has been done40, policy options have been published 41-43, and many US states have now passed anti-discrimination legislation (see
www.genome.gov/Pages/PolicyEthics/Leg/StateIns and www.genome.gov/Pages/PolicyEthics/Leg/StateEmploy). The US Equal Employment Opportunity Commission has ruled that the Americans with Disabilities Act should apply to discrimination based on predictive genetic information44, but the legal status of that construct remains in some doubt. Although an executive order protects US government employees against genetic discrimination, this does not apply to other workers. Thus, many observers have concluded that effective federal legislation is needed, and the US Congress is currently considering such a law.

Making certain that genetic tests offered to the public have established clinical validity and usefulness must be a priority for future research and policy making. In the United States, the Secretary's Advisory Committee on Genetic Testing extensively reviewed this area and concluded that further oversight is needed, asking the Food and Drug Administration to review new predictive genetic tests prior to marketing (www4.od.nih.gov/oba/sacgt/reports/oversight_report.pdf). That recommendation has not yet been acted on; meanwhile, numerous websites offering unvalidated genetic tests directly to the public, often combined with the sale of "nutraceuticals" and other products of highly questionable value, are proliferating.

Many issues currently swirl around the proper conduct of genetic research involving human subjects, and further work is needed to achieve a satisfactory balance between the protection of research participants from harm and the ability to conduct clinical research that benefits society as a whole. Much effort has gone into developing appropriate guidelines for the use of stored tissue specimens, for community consultation when conducting genetic research with identifiable populations, and for the consent of non-examined family members when conducting pedigree research, but confusion still remains for many investigators and institutional review boards.

The use of genomic information is not limited to the arenas of biology and of health, and further research and development of policy options is also needed for the many other applications of such information. The array of additional users is likely to include the life, disability, and long-term care insurance industries, the legal system, the military, educational institutions, and adoption agencies. Although some of the research informing the medical uses of genomics will be useful in broader settings, dedicated research outside the healthcare sphere is needed to explore the public values that apply to uses of genomics other than for health care and their relationship to specific contextual applications. For example, should genetic information on predisposition to hyperactivity be available in the future to school officials? Or should genetic information about behavioural traits be admissible in criminal or civil proceedings? Genomics also provides greater opportunity to understand ancestral origins of populations and individuals, which raises issues such as whether genetic information should be used for defining membership in a minority group.



Because uses of genomics outside the healthcare setting will involve a significantly broader community of stakeholders, both research and policy development in this area must involve individuals and organizations besides those involved in the medical applications of genomics. But many of the same perspectives essential to research and policy development for the medical uses of genomics are also essential. Both the potential users of non-medical applications of genomics and the public need education to understand better the nature and limits of genomic information (Box 6) and to grasp the ethical, legal, and social implications of its uses outside health care (Box 5).



Grand Challenge III-2: Understand the Relationships between Genomics, Race, and Ethnicity, and the Consequences of Uncovering These Relationships

Race is a largely non-biological concept confounded by misunderstanding and a long history of prejudice. The relationship of genomics to the concepts of race and ethnicity has to be considered within complex historical and social contexts.

Most variation in the genome is shared between all populations, but certain alleles are more frequent in some populations than in others, largely as a result of history and geography. Use of genetic data to define racial groups, or of racial categories to classify biological traits, is prone to misinterpretation. To minimize such misinterpretation, the biological and sociocultural factors that interrelate genetics with constructs of race and ethnicity need to be better understood and communicated within the next few years.

This will require research on how different individuals and cultures conceive of race, ethnicity, group identity, and self-identity, and what role they believe genes or other biological factors have. It will also require a critical examination of how the scientific community understands and uses these concepts in designing research and presenting findings, and of how the media report these. Also necessary is widespread education about the biological meaning and limitations of research findings in this area (Box 6), and the formulation and adoption of public-policy options that protect against genomics-based discrimination or maltreatment (see Grand Challenge III-1).

Grand Challenge III-3: Understand the Consequences of Uncovering the Genomic Contributions to Human Traits and Behaviours

Genes influence not only health and disease, but also human traits and behaviours. Science is only beginning to unravel the complicated pathways that underlie such attributes as handedness, cognition, diurnal rhythms, and various behavioural characteristics. Too often, research in behavioural genetics, such as that regarding sexual orientation or intelligence, has been poorly designed, and its findings have been communicated in a way that oversimplifies and overstates the role of genetic factors. This has caused serious problems for those who have been stigmatized by the suggestion that alleles associated with what some people perceive as "negative" physiological or behavioural traits are more frequent in certain populations. Given this history and the real potential for recurrence, it is particularly important to gather sufficient scientifically valid information about genetic and environmental factors to provide a sound understanding of the contributions and interactions between genes and environment in these complex phenotypes.

It is also important that there be robust research to investigate the implications, for both individuals and society, of uncovering any genomic contributions that there may be to traits and behaviours. The field of genomics has a responsibility to consider the social implications of research into the genetic contributions to traits and behaviours, perhaps an even greater responsibility than in other areas where there is less of a history of misunderstanding and stigmatization. Decisions about research in this area are often best made with input from a diverse group of individuals and organizations.

Grand Challenge III-4: Assess How to Define the Ethical Boundaries for Uses of Genomics

Genetics and genomics can contribute understanding to many areas of biology, health, and life. Some of these human applications are controversial, with some members of the public questioning the propriety of their scientific exploration. Although freedom of scientific inquiry has been a cardinal feature of human progress, it is not unbounded. It is important for society to define the appropriate and inappropriate uses of genomics. Conversations between diverse parties based on an accurate and detailed understanding of the relevant science and ethical, legal, and social factors will promote the formulation and implementation of effective policies. For instance, in reproductive genetic testing, it is crucial to include perspectives from the disability community. Research should explore how different individuals, cultures, and religious traditions view the ethical boundaries for the uses of genomics — for instance, which sets of values determine attitudes towards the appropriateness of applying genomics to such areas as reproductive genetic testing, "genetic enhancement," and germline gene transfer.

References
  1. Anderlik, M. R. & Rothstein, M.A. Privacy and confidentiality of genetic information: What rules for the new science? Annu. Rev. Genom.Hum.Genet. 2, 401-433 (2001).

  2. Hudson, K. L.,Rothenberg,K. H.,Andrews, L. B.,Kahn, M. J. E. & Collins, F. S. Genetic discrimination and health-insurance — An urgent need for reform. Science 270, 391-393 (1995).

  3. Rothenberg, K. et al. Genetic information and the workplace: Legislative approaches and policy challenges. Science 275, 1755-1757 (1997).

  4. Fuller, B. P. et al. Policy forum: Ethics — privacy in genetics research. Science 285, 1359-1361 (1999).

  5. Miller, P. S. Is there a pink slip in my genes? J.Health Care Law Policy 3, 225-265 (2000).
Courtesy: National Human Genome Research Institute


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