|
Shifting Perceptions of the Benefit of Genetic Information (Davis & Henderson)
Significance: Much has been documented about perceptions of the risks of genetic information, and the tension between the interests of individuals and groups at every stage of the research process. Less attention has been paid to perceptions of benefit and how these may shift in scale-up genomic research (e.g., less expectation of personal benefit, reformulations of what constitutes benefit to groups or society).
The benefit issue has been central to several ELSI-funded studies among CGS investigators (described in C2). Beginning with King’s delineation of the types of benefit in clinical trials, studies have explored subjects’ perceptions of benefit to self, family, race or ethnic group, and society. Preliminary results from our P20 studies revealed that research participants in registries, biobanks, and genetic epidemiology studies are very positive about the potential benefits of genetic research related to health conditions. Pilot work on expanded newborn screening found similar optimism regarding early discovery and disclosure of genetic information. These studies also revealed that many subjects have low genetic literacy, making it methodologically challenging to ask about the risks and benefits of specific genetic research or technologies without shaping the subject’s response. Our multiple projects provide a unique opportunity to examine views held by a diverse public about genetic information and the potential benefits that it may provide, including when unanticipated information is disclosed. In this cross-cutting empirical analysis, we will combine data collected across studies using similar questions to examine the views of benefit in different research and clinical contexts. This project addresses three research questions.
Research Question 1. How do people in research contexts perceive the benefit of genetic information?
Research Question 2. How do individuals and families offered genetic information in clinical contexts perceive the benefit of genetic information?
Research Question 3. Is it possible to develop a unified model of benefit?
Outcomes: Scale-up research has created new conditions of subject participation. In the most extreme case of centralized DNA biobanks, subject samples are de-identified and there is no possibility of individual benefit. On the other extreme, are individuals engaged in translational studies where clinically relevant information is provided, and where the concern is that they understand what benefits this information has for them. Results from this cross-cutting analysis will help assess how individuals engaged in the spectrum of large-scale genomic research understand their participation and expected results. Policy-relevant publications will inform IRBs, research administrators, genome scientists, and investigators at NIH and other research units regarding these questions. Consultation with CGS External Advisors and input from the communities that can be accessed through the Outreach component will also enrich an analysis regarding minority communities’ perceptions of benefits and willingness to participate in genetic research studies.
|
