Issues in Returning Individual Results from Genome Research Using Population-Based Banked Specimens, with a Focus on the National Health and Nutrition Examination Survey Workshop Summary (2014) / Chapter Skim
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7 The Logistics of Returning Genomic Results from NHANES
7 The Logistics of Returning Genomic Results from NHANES
Pages 45-52
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From page 45... ...
The NHANES program has considerable experience in reporting medically relevant results such as high cholesterol and high blood lead. When the program makes referrals to care providers, the providers typically know how to respond to study participants.
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From page 46... ...
Porter explained that the survey program has considered several plans for returning results, one being a retrospective plan dealing with people who were previously consented. NHANES would need to develop procedures for returning results given that the prior consents stated that no results would be reported.
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From page 47... ...
This is wishful thinking at this point in time, she observed, but may make the most sense for recruiting participants who would be told they are going to have a physical exam, a bone scan, an oral health exam, have blood drawn, and also some genetic tests, and that they will receive all the findings. Porter said this plan would be very expensive, bureaucratically difficult, and likely require major funding partners to help with lab logistics and staffing requirements.
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From page 48... ...
A second, different kind of engagement that Edwards discussed is the process of intensive community deliberation, events that involve representative groups and engage them deeply over a period of time. This process has been used successfully in California to help generate biobank policy, with community participants giving feedback directly to biobank owners and researchers and influencing policy on the fly.
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From page 49... ...
She explained the proposed solution involved a governance process that focused on ways of doing as much de-identified research as possible, and on the establishment of a third-party review system for all data access requests, including a scientific advisory board and data access committee. The IOM committee did not look in depth at the return-of-results issue, but did propose the idea of an entity similar to the Data and Safety Monitoring Board, an independent group of experts that advises the National Institute of Dental and Craniofacial Research and its study investigators.
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From page 50... ...
She said people increasingly desire better access to their medical records, and, in general, place increasing value on staying healthy and taking personal responsibility for health. Data suggest that if information about individual health becomes knowable, people want to know it.
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From page 51... ...
That said, Biesecker mentioned that better follow-up can be integrated into the general health care system, and more innovative use of social media and other Internet resources can assist people to take control over their information and not leave matters to a specialist or sub-specialist.
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