| 8:15 a.m. - 8:30 a.m. | Welcome and review of NHGRI's planning process - Alan Guttmacher |
| 8:45 a.m.- 9:15 a.m. | Introduction to the workshop - Mark Rothstein |
| 9:15 a.m. - 10:00 a.m. | Non-medical applications of genomics: Why are we worried? - Karen Rothenberg |
10:15 a.m. - 11:30 a.m.
Breakout discussions | Predictions of Future Health and Life Expectancy
(Discussion Leader - Mildred Cho)
The use of genetic information to predict health status and life expectancy (e.g., in health, life, disability, long-term care insurance) has been widely debated and has been the subject of some legislative action. As the research and clinical focus of predictive genetic information continues to shift to complex disorders, the non-medical uses will consider gene-environment interactions to a greater extent. This includes the use of genetic information in setting occupational and environmental exposure standards for populations and decisions about the exposure of individuals. There also are likely to be increasing attempts to introduce life expectancy calculations based on genetic factors in civil litigation where the plaintiff seeks "permanent" damages.
Identification
(Discussion Leader - Andre Davis)
The importance of DNA as an identification tool is likely to increase in the future. It may be used for security purposes, for immigration, heirship and other matters. DNA paternity testing is increasingly common, and it could even become a routine part of newborn testing. There also have been calls for universal forensic DNA data banks for all individuals living in this country. There is a seemingly endless list of possible uses. Already, some auto insurance companies have performed DNA testing of airbags after crashes to determine who was driving the car at the time of the accident. Should our DNA become our all-purpose identifier? |
12:30 p.m. - 1:45 p.m.
Breakout discussions | Behavioral Genetics
(Discussion Leader - Paul Miller)
A wide range of behavioral genetic information may be proposed for non-medical uses. These include (1) job assignment in private sector employment and the military; (2) auto and other insurance coverage based on predictions of emotional stability, risk-taking, and other behaviors; (3) educational admissions, placement, tracking, and special services based on cognitive abilities and disabilities; (4) criminal justice decisions regarding culpability and mitigation, bail, sentencing, parole, and sexual predator commitment laws; and (4) determinations of suitability for child custody, adoption, and visitation. Behavioral genetics also may affect public attitudes about addictive behavior, sexual orientation, and other contentious issues.
DNA and Society
(Discussion Leader - Lori Andrews)
To what degree is DNA testing likely to be pervasive in society in the above listed ways and in others? Should political candidates reveal their genetic profiles to assure voters that they will remain in good health for the term they are seeking? Should any limits be placed on sports teams performing DNA tests to determine whether athletes were receiving xenobiotic materials to aid performance? Are special issues raised when it is the government attempting to obtain and use genetic samples? In clinical genetics the model of non-directive counseling and informed consent have long been key principles. To what degree will a different model - compelled testing - lead to unanticipated social costs and perhaps even undermine clinical decision-making? Will genetic reductionism, determinism, and fatalism become pervasive? |
| 2:00 p.m. - 3:00 p.m. | Presentation of breakout discussions - Discussion Leaders |
| 3:00 p.m. - 4:00 p.m. | Overview - Mark Rothstein - Within the broad landscape of the workshop topics, what are the important priorities and unmet needs?
- What important priorities/challenges/opportunities should NHGRI tackle? Why?
- If not NHGRI, then who?
- What specific activities should NHGRI undertake to accomplish these priorities/goals?
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| 4:00 p.m. - 4:30 p.m. | Concluding remarks and next steps for NHGRI - Francis Collins |
