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Ethical, Legal and Social Factors that Influence the Translation of Genomic Information to Improved Human Health
Grand Challenges II-5, II-6 and III-1
Research on issues in this area is critical given the increasing availability and use of large amounts of potentially individually identifiable genomic information and the movement towards personalized genetic medicine. Projects focus on issues surrounding access to and use of new genetic information and technologies to improve human health.
Examples of possible research questions include:
- What are the optimal models for provider/patient communication about the meaning and implications of genomic information?
- How do individuals understand genomic information and incorporate that knowledge into their decision making?
- How will genomic information on individuals be used by health and life insurers?
- What happens if people get more information than they expected (so-called unanticipated or incidental findings)?
- What impact does receiving personalized genomic information have on an individuals' adherence to surveillance and management interventions?
- What impact does receiving personalized genomic information have on an individuals' health and quality of life?
- How will the ability to generate personal genomic information affect the distribution of health care resources? Will it have an effect-either positive or negative-on current disparities in health care and health outcomes?
- How do various approaches to defining and including diverse populations in clinical genetic and genomic research contribute to or ameliorate current disparities in health care and health outcomes?
- What if any effect will the clinical use of genetic tests targeted to specific racial and ethnic groups have on current disparities in access to and use of health care services? What if any effect will it have on clinical decision-making, health behaviors and health outcomes?
Last Reviewed: September 25, 2008
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