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ARRA Investments in Ethical, Legal, and Social Implications of Genetic Research

Public Health Burden
As researchers learn more about the human genome, we will face complex and challenging issues in applying genomic information in clinical and public health activities. Research into the potential societal uses of genomic knowledge and the ethical, legal, and social implications of such uses, will provide quantitative and qualitative data to inform development of new policies and processes in applying genomic technologies and insights to improve health.

Issues Surrounding the Conduct of Genetic Research
ARRA- funded projects in this area will explore strategies for conducting cutting-edge genetic and genomic research involving human research participants in an ethically responsible manner. The use of genetic information in recruiting participants from existing research studies for follow-up research has the potential to advance the pace of genomic discovery and to untangle the genetic contributions to such common disorders as asthma, cancer, diabetes, heart disease, and obesity. However, selecting and re-contacting research participants based upon genetic analysis often raises a variety of ethical issues.
  • One funded ARRA grant will support the collection of empirical data about the challenges in research participant re-contact and recruitment, from the perspectives of researchers, research participants, Institutional Review Boards, and other stakeholders. The goal is to develop evidence-based guidelines that offer appropriate research participant protections, while avoiding constraints that could have a chilling effect on research by limiting participation opportunities for willing volunteers.1 The development of such guidelines would increase participation in both basic and clinical studies across the entire population, thereby facilitating research that incorporates powerful, genomics-based study design to advance research to improve health outcomes for all.
How Diverse Communities View Genetic Research and Uses of Genetic Information
ARRA-supported research in this area will explore how different individuals, cultures, and religious traditions define the boundaries for appropriate genetic research and for the uses of genetic information within healthcare and other settings.
  • Among the innovative efforts funded in this area is an initiative to work with the Squaxin Island Tribe to engage members of an underserved community to participate in setting priorities and establishing acceptable processes for conducting genetic and genomic research involving their community. In addition to developing a policy “tool kit” tailored to the specific needs and desires of the Squaxin Island Tribe, the researchers will document the community’s deliberation process as a basis for creating a generalized tool kit for use within a broad range of American Indian, Alaska Native, and other underserved communities. The goal is to develop the capacity within underserved communities to join in genetic and genomic research as full partners, thereby promoting public health benefit and supporting the development of positive changes for the community.1

  1. 1RC1HG005788-01 Engaging Tribal Participation in Research through Priority Setting and Regulation --Whitener, Ron (WA)

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