Studies of the Ethical, Legal, and Social Implications (ELSI) of human genetic variation research for individuals and diverse racial and ethnic groups. (Fellowships, Grants, & Awards).

Although the ultimate goal of studies aimed at relating human genetic variation to disease risk is the improvement of human health, concerns have been raised that the findings of some genetic variation research may be misunderstood and misused. Concerns have also been raised that such findings, if interpreted incorrectly and misused, will exacerbate rather than ameliorate existing health disparities among racial, ethnic, and socioeconomic groups. The National Human Genome Research Institute (NHGRI), through its Ethical, Legal, and Social Implications (ELSI) Research Program, proposes a new initiative to encourage additional ELSI research on genetic variation research for both individuals and diverse population groups. Examples of the types of topics that would be appropriate for applications submitted under this initiative include but are not limited to the following:

1) How will individuals understand and use genetic information that suggests the possibility of a meaningful association between their genotype and increased or decreased risk for a particular common, complex disorder (or between their genotype and increased or decreased responsiveness to a particular medication or susceptibility to a potentially hazardous environmental substance)? How will genetic information that suggests the possibility of differences in frequencies among groups of the genetic variants that contribute to these traits be understood and used?

2) How will genetic information that suggests the possibility of group differences in the prevalence of a genotype associated with increased or decreased .Ii risk for a particular common, complex disorder (or increased or decreased responsiveness to a particular medication or susceptibility to a potentially hazardous environmental substance) be understood and used by health professionals? How will it be understood and used by various other societal decision makers (e.g., insurance companies, pharmaceutical companies, employers, health care policy makers, environmental policy makers, educational institutions, courts, adoption agencies, the military)? How will this information differentially affect individual decision making over the life course (e.g., insurance, retirement age, savings)? How will this information affect public and institutional policy for the aged (e.g., Social Security, Medicare, retirement benefits) or for individuals with disabilities? What long-term effect, if any, will the use of this information have on health disparities among groups?

3) In reporting The results of human genetic variation research, how do investigators assign causality when a particular disorder is associated with both genetic and nongenetic (environmental, behavioral, social) risk factors? How do the media assign causality when reporting on such studies? What are the ethical obligations of investigators when they report the findings of disease-gene association research involving common, complex disorders? What are the ethical obligations of the media when they report on such studies?

4) How do investigators define and describe the groups with whom they conduct human genetic variation research? How do the media describe those groups when reporting on such studies? What are the ethical obligations of investigators when they define and describe the groups with whom they conduct genetic variation research? What are the ethical obligations of the media when they report on such studies?

5) What new problems arise for individuals and groups when genetic variation data are incorporated into social survey research? How will individuals and groups perceive the risks and benefits of participating in these surveys? How can these surveys be used to study the factors motivating participation?

6) How are the statements that "all human beings are 99.9% genetically the same" and "there is no biological basis for precise racial categorizations" understood by individuals who self-identify as members of particular racial, ethnic, or socioeconomic groups? How do such statements affect how groups define themselves or are defined by others? What is the impact of such statements on individual conceptions of self and group identity?

This RFA will use the NIH regular research project grant (R01) and small research project grant (R03) award mechanisms. The PHS 398 research grant application instructions and forms (rev. 5/2001) at http://grants.nih.gov/grants/funding/ phs398/phs398.html must be used in applying for these grants. The deadline for letters of intent is 1 March 2002, with final applications due 10 July 2002. More information is available online at http://grants.nih.gov/grants/guide/rfa-files/ RFA-HG-02-003.html.

Contact: Rudy Pozzatti, Office of Scientific Review, NHGRI, 31 Center Drive, Room B2B37, Bethesda, MD 20892-2033 USA, 301-402-0838, fax: [phone], e-mail: [e-mail]. Reference: RFA No. RFA-HG-02-003