Summary Second National Conference on Genetics and Disease Prevention

Societal Issues

• Knowledge gained through genetic testing of ways to identify disease predisposition in healthy people does not automatically confer benefits. More research is needed on the psychological and familial impact of genetic testing.
• Aside from any health benefits of genetic testing, positive outcomes include decreased psychological distress, increased perception of control and quality of life, positive implications for family function, and more accurate perception of risk.
• Negative outcomes associated with genetic testing include guilt, anger, fear, feelings of isolation, perceived loss of control, and worry about the clinical effects of the inherited condition.
• Studies of family dynamics should address how the information is shared, what the anticipated reactions of family members will be, how members of the family cope with the information, and when the best timing for genetic counseling and testing will be.

Engaging Communities

• Social and biological identity are not synonymous. If genetic research treats social and biological categories as equivalent, this could obscure the diversity within ethnic communities and reinforce discriminatory stereotyping.
• Identifying and addressing the social units that make decisions about illness and treatment is important when involving different communities in the use of genetic tests and services.
• Identifying a community’s pre-existing concerns about illness and avoiding academic jargon will help researchers and policy-makers assure that the risks and benefits are relevant.

• Tribes have the right to say "no" to genetic research. This right is important to Native Americans who only now are receiving the privileges of their semi-sovereign status.
• Many believe that the assurances of protecting information gathered from genetic testing will be violated just as were treaties with the U.S. government. Developing strong sanctions around misuse of genetic research may open barriers.
• Many Native Americans resist participating in studies (such as the Human Genome Diversity Project, which collects genetic information to analyze the evolution of populations) for fear that their DNA will be stolen and used for financial gain.

Concerns of African Americans

• Myths, attributed to past research, add to the perception that genetics is used to show a biologic basis for health differences among various groups.
• Minorities generally have no objection to DNA research. However, as a community, they want to be included in the planning of the research and assured that there will be benefits but no harm.
• In perspective, black communities are much more concerned about health risks such as injury, HIV prevention, and substance abuse.

• Genetic exceptionalism presumes that genetic data are different from health data and should be specifically protected. This logic is based on a number of key assumptions, each of which is flawed:

1. Genetic information is like a diary of future medical conditions; however, non-genetic indicators (e.g., blood pressure, cholesterol) can also suggest future medical problems.

2. Genetic features are fixed and unchanging; however, genetic variation can be altered by environmental factors.

3. Genetic data are uniquely portable and personal; however, the genetic code is only one of several features that is unique to individuals (e.g., fingerprints).

4. Tests can be run on even the smallest of DNA samples, giving rise to privacy concerns; however, health information is increasingly shared electronically.

5. Genetic information provides information on other family members; however, family medical histories have long been used in medical practice.

• Common law covers the confidentiality of the patient-doctor relationship, but does not cover electronic storage and dissemination of information.
• Forty states have some type of genetic privacy legislation. No genetic-specific privacy legislation exists at the federal level, although bills are being introduced.
• Constitutional protections balance harm to individuals against collective interest. "Fair use practices" ensure that data are used for the intended purposes and include the right to review and correct personal data.

The CDC Office of Genomics and Disease Prevention makes this information available as a public service only. Providing this information does not constitute endorsement by the CDC.