Notice Number: NOT-HG-05-002

Key Dates
Release Date: February 4, 2005

The National Human Genome Research Institute (NHGRI) calls the attention of the sickle cell disease research community and other researchers interested in studying the ethical, legal and social issues related to sickle cell disease to the Ethical, Legal, and Social Implications (ELSI) Research Program's program announcements (http://grants.nih.gov/grants/guide/pa-files/PA-04-050.html and http://grants.nih.gov/grants/guide/pa-files/PA-04-051.html). The ELSI program announcement is designed to solicit studies on implications of research, technologies, and information related to genetic disorders, including sickle cell disease and other hemoglobinopathies. This announcement is designed to encourage research applications in this area as suggested by participants of the conference on New Directions for Sickle Cell Therapy in the Genome Era that was held November 19-21, 2004, in Bethesda, MD. A summary of the proceedings can be found at: http://www.genome.gov/Pages/About/NACHGR/2004NACHGRAgenda/TabRSickleCellConferenceSummary.pdf.

A goal of the NHGRI ELSI research program is to better understand the relationships among genomics, genetics, and genetic disorders that affect individuals from various racial and ethnic backgrounds. A further goal is to investigate how genetic technologies and information are discussed, offered, accepted, and provided in clinical and research settings and how it influences health strategies and behaviors, health outcomes, and costs in diverse populations.

Scope of Research

Sickle cell disease research, particularly research on genetic aspects of the disorder, has a complex social history. Therefore, as the research community begins to adopt genomic approaches to studying sickle cell disease, careful analysis of the ethical, legal and social implications (ELSI) of this research is needed. Also, because of this complex history, and the development over the past 15 years of a body of genomics and genetics-based ELSI research and of a community of ELSI researchers, genomics-based sickle cell disease research currently presents a significant opportunity for ELSI research.

Examples of the types of research questions that might be considered are listed below. This list is it not all-inclusive and thus, other relevant topics may also be appropriate.

• What impact will the history of misuse of sickle cell genetic screening to stigmatize African Americans have on current and future genomics and genetics-based sickle cell disease research and health care?
• How might this history influence participation in genomics and genetics-based sickle cell disease research by African Americans? How might it affect the perceptions and potential use of genomics and genetics-based health services by African Americans?
• What can genomics and genetics researchers and health care providers do to build and maintain trust with individuals, families, and communities in which sickle cell disease is highly prevalent?
• What are the best practices in genetic screening and counseling strategies for disorders, such as sickle cell disease, that disproportionately affect a minority population?
• What are the financial and other barriers, if any, to the development of and access to pharmacogenomic and other approaches to treat disorders such as sickle cell disease, that disproportionately affect individuals from minority populations; and what options are there for overcoming them?
• How might participation in genomics and genetics-based sickle cell research affect individuals, families and communities?
• How does information on the genetic aspects of sickle cell disease influence how individuals, families and communities understand self-identity, ancestry, and race?
• Is there evidence of ongoing stigmatization or discrimination in health care, employment, and insurance related to genetic information regarding sickle cell disease or trait?

Application deadlines for R01s and R03s are February 1, June 1, and October 1.

Inquiries

We encourage your inquiries concerning this notice and welcome the opportunity to answer questions from potential applicants.

Direct questions about scientific/research issues to:

National Human Genome Research Institute
Elizabeth J. Thomson, MS, RN, CGC, FAAN
Program Director
Ethical, Legal, and Social Implications Research
National Human Genome Research Institute
5635 Fishers Lane, Suite 4076
Bethesda, MD 20892-9305
Phone: (301)402-4997
FAX: (301)402-1950
E-mail: et22s@nih.gov
http://www.genome.gov

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