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Returning Individual Research Results to Participants Guidance for a New Research Paradigm (2018) / Chapter Skim
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Appendix A: Study Approach and Methods
Pages 279-288

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From page 279...
... COMMITTEE EXPERTISE The National Academies formed a committee of 15 experts to conduct a 14-month study to deliberate and respond to the Statement of Task. The committee was composed of individuals with expertise in bioethics, legal and regulatory practice, research and laboratory practice, health communication, health literacy, decision science, and patient and community advocacy.
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From page 280...
... personal communication between committee members and staff and individuals who have been directly involved in or have special knowledge of the issues under consideration. SOLICITATION FOR PUBLIC COMMENT The committee proactively solicited a call for public comments in order to capture the diverse perspectives on the current evidence base and on practices related to the return of individual research results generated in laboratories that perform tests on human biospecimens.
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From page 281...
... Penn State Milton S Hershey Medical Center 21.
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From page 282...
... We received 35 comments for committee consideration. SOLICITATION OF PARTICIPANT AND COMMUNITY REPRESENTATIVES To enhance its understanding of the diverse perspectives among research participants on issues relevant to the return of individual research results, the committee solicited nominations for interviewees from research participant networks (e.g., National Patient-Centered Clinical Research Network [PCORNet]
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From page 283...
... • CTSA (Clinical and Translational Science Awards) Collaboration and Engagement Domain Task Force • Genetic Alliance • Healthy African American Families • HIV Prevention Trials Network • HIV Vaccine Trials Network • International Maternal Pediatric Adolescent AIDS Clinical Trials • Jackson Heart Study • National Minority AIDS Council (District of Columbia)
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From page 284...
... PUBLIC COMMENTS AND CONTRIBUTIONS • Douglas A Beigel, COLA • Adam Berger, Food and Drug Administration • Leslie Biesecker, National Human Genome Research Institute • Angela Bradbury, University of Pennsylvania • Christopher R
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From page 285...
... APPENDIX A 285 conducted throughout the committee's deliberations as novel issues arose and research gaps were identified. Return of Results in Practice Search Parameters: • Date range: 2005 to present • International, English only Databases: • Embase • Medline • Cochrane Databases of Systematic Reviews • PubMed • Web of Science • Scopus Search Strategy: Research participant • Search terms: human experimentation, participant decision making, re search participants, participant perspectives, study participants Return of research results • Search terms: individual research results, methods of returning research results, research findings, individual research results, return of results Additional terms of interest • Search terms: Native Americans, American Indians, attitudes, benefit, clinical care choices, decision making, end of life, harm, opinions, pal liative care, privacy, risk, stigma, terminal care, therapeutics, treatment, trust, value, vulnerable populations, human rights, Helsinki Declaration Legal and Operational Considerations for Research Laboratories Search Parameters: • Date range: 2005 to present • International, English only Databases: • Scopus • Web of Science • Lexis Law Reviews
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From page 286...
... AND PUBYEAR AFT 2004 Return of Results in the Environmental Health Field Search Parameters: • Date range: 2000 to present • International, English only Databases: • Department of Energy • Environmental Protection Agency • Greenfile • Proquest • Science.gov • Scopus • Web of Science Search Strategy: Research participant perspectives • TITLE-ABS-KEY ("individual research results" OR "research findings" OR "research results" OR "return of individual research results" OR "re turn of results" OR "disclosure of research results") AND • TITLE-ABS-KEY ("research participants" OR "research participants per spectives" OR "study participants" OR subjects)
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From page 287...
... APPENDIX A 287 • ts=("research participants" OR "research participants perspectives" OR "study participants" OR subjects) AND • ts=("american indians" OR indians OR attitudes OR benefit OR "clinical care choices" OR "decision making" OR "end of life" OR harm OR "na tive americans" OR opinions OR "palliative care" OR privacy OR risk OR stigma OR "terminal care" OR therapeutics OR treatment OR trust OR value OR "vulnerable populations")
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Key Terms

  • public comments
  • research participant
  • clinical trials
  • community advisory
  • texas health

  • health science
  • research network
  • research consortium
  • health disparities
  • health research

  • trials network
  • science center
  • participant perspectives
  • literature searches
  • science awards

  • community representatives
  • systematic reviews
  • translational science
  • literature reviews
  • human biospecimens

  • heart study
  • aids clinical
  • advisory boards
  • results generated
  • cochrane databases

  • medical college
  • background research
  • mexico health
  • kentucky research
  • genome research


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