Non-Medical Workshop Summary

National Human Genome Research Institute

National Institutes of Health
U.S. Department of Health and Human Services

Workshop Summary

Non-Medical Applications of Genomics
National Human Genome Research Institute (NHGRI)

Hyatt Regency Bethesda
Bethesda, Md.

July 11, 2002

The National Human Genome Research Institute (NHGRI) has begun a year long planning effort to help guide the institute into the new era of genome research that will follow the completion of the Human Genome Project (HGP) in the spring of 2003. As part of this process, NHGRI has sponsored an ongoing series of workshops focused on specific health, scientific and social topics. On July 11, 2002, NHGRI held a workshop to discuss the non-medical applications of genomics. This workshop was designed to identify the potential implications of non-medical applications of genomics, explore the optimal research agenda to evaluate them and identify the policy implications of these applications. Attendees included individuals with expertise and/or interest in the workshop topics.

Prior to the workshop, a variety of relevant topics were identified, and individuals with expertise in these topics were asked to provide answers to the following questions: (1) What is the state of the art now for this topic? (2) What is the state of the law now for this topic? (3) What is likely to change over the next 10 years? (4) Who else is working on this topic? and (5) Why would it be good or bad for NHGRI to pursue? The topics included Civil Litigation, Criminal Forensics, Criminal Law, Employment, Environment, Family Law, Identity, Insurance, Civil Litigation, Government Uses, Education and Sports.

Alan Guttmacher, Deputy Director NHGRI, opened the workshop by asking the attendees to think broadly, boldly and think of new things and find new ways for addressing old questions as they worked to identify associated non-medical application challenges and define NHGRI's role.

To set the tone for the meeting, Karen Rothenberg encouraged workshop members to voice their personal areas of concern and worry as it related to non-medical applications by asking: "Why are we afraid?" As the discussion continued, several prominent themes emerged. At the heart of this fear were research-related questions and motivations, commercial and legal implications, deep personal emotions that impact our core values including family, and issues of personal safety or autonomy. The group discussed what made one use for genetic information more appropriate or comfortable than another and how this might vary in different communities or ethnic cultures. It was suggested that non-medical and medical uses are interrelated, (i.e., prenatal testing can be described as a medical or non-medical use depending on the intent or purpose of use). In most medical applications of genetics, the person tested is the beneficiary, while in non-medical applications, these individuals may not be the beneficiaries. Based on the discussions, it was suggested that NHGRI should:

Four breakout sessions were held to raise new ideas and to promote focused interaction. These sessions are summarized below:

Predictions of Future Health and Life Expectancy (Mildred Cho, Discussion Leader)

Identification (Andre Davis, Discussion Leader)

Behavioral Genetics (Paul Miller, Discussion Leader)

DNA and Society (Lori Andrews, Discussion Leader)

Francis Collins, Director of NHGRI, concluded the workshop by challenging the attendees to distill specific goals that would enhance the NHGRI mission. The group concluded that NHGRI should:

Summation: Regarding the issues of non-medical applications of genomics, NHGRI should take a leadership role in:

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Last Reviewed: June 2005