Literature DB >> 32396832

Are Public Repository Requirements Exacerbating Lack of Diversity?

Thomas May1.   

Abstract

Although public repository requirements are aimed at researchers and designed to ensure that the utility of the limited data we have is optimized, these policies also have ramifications for research participants. In this opinion article, I discuss how the nature of such repositories can subject participants whose data are 'banked' to unwitting participation in scientific projects they might find objectionable. In addition, concerns about the privacy of banked genomic data are exacerbated by recent projects that demonstrate the ability to re-identify genomic data, raising the specter of discriminatory or oppressive use of this information. These concerns are most likely to discourage participation in research that requires data sharing among those who have experienced these phenomena and are less likely to discount their likelihood.
Copyright © 2020 Elsevier Ltd. All rights reserved.

Entities:  

Keywords:  data sharing; ethics

Mesh:

Year:  2020        PMID: 32396832      PMCID: PMC7372716          DOI: 10.1016/j.tig.2020.03.004

Source DB:  PubMed          Journal:  Trends Genet        ISSN: 0168-9525            Impact factor:   11.639


  13 in total

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Authors:  Terre A Satterfield; C K Mertz; Paul Slovic
Journal:  Risk Anal       Date:  2004-02       Impact factor: 4.000

2.  The Havasupai Indian tribe case--lessons for research involving stored biologic samples.

Authors:  Michelle M Mello; Leslie E Wolf
Journal:  N Engl J Med       Date:  2010-06-09       Impact factor: 91.245

3.  Are Requirements to Deposit Data in Research Repositories Compatible With the European Union's General Data Protection Regulation?

Authors:  Deborah Mascalzoni; Heidi Beate Bentzen; Isabelle Budin-Ljøsne; Lee Andrew Bygrave; Jessica Bell; Edward S Dove; Christian Fuchsberger; Kristian Hveem; Michaela Th Mayrhofer; Viviana Meraviglia; David R O'Brien; Cristian Pattaro; Peter P Pramstaller; Vojin Rakic; Alessandra Rossini; Mahsa Shabani; Dan Jerker B Svantesson; Marta Tomasi; Lars Ursin; Matthias Wjst; Jane Kaye
Journal:  Ann Intern Med       Date:  2019-02-12       Impact factor: 25.391

4.  Sociogenetic Risks - Ancestry DNA Testing, Third-Party Identity, and Protection of Privacy.

Authors:  Thomas May
Journal:  N Engl J Med       Date:  2018-06-20       Impact factor: 91.245

5.  Public and biobank participant attitudes toward genetic research participation and data sharing.

Authors:  A A Lemke; W A Wolf; J Hebert-Beirne; M E Smith
Journal:  Public Health Genomics       Date:  2010-01-15       Impact factor: 2.000

6.  Data re-identification: societal safeguards.

Authors:  Russ B Altman; Ellen Wright Clayton; Isaac S Kohane; Bradley A Malin; Dan M Roden
Journal:  Science       Date:  2013-03-01       Impact factor: 47.728

Review 7.  Prioritizing diversity in human genomics research.

Authors:  Lucia A Hindorff; Vence L Bonham; Lawrence C Brody; Margaret E C Ginoza; Carolyn M Hutter; Teri A Manolio; Eric D Green
Journal:  Nat Rev Genet       Date:  2017-11-20       Impact factor: 53.242

8.  To share or not to share: a randomized trial of consent for data sharing in genome research.

Authors:  Amy L McGuire; Jill M Oliver; Melody J Slashinski; Jennifer L Graves; Tao Wang; P Adam Kelly; William Fisher; Ching C Lau; John Goss; Mehmet Okcu; Diane Treadwell-Deering; Alica M Goldman; Jeffrey L Noebels; Susan G Hilsenbeck
Journal:  Genet Med       Date:  2011-11       Impact factor: 8.822

9.  "I don't want to be Henrietta Lacks": diverse patient perspectives on donating biospecimens for precision medicine research.

Authors:  Sandra S-J Lee; Mildred K Cho; Stephanie A Kraft; Nina Varsava; Katie Gillespie; Kelly E Ormond; Benjamin S Wilfond; David Magnus
Journal:  Genet Med       Date:  2018-06-11       Impact factor: 8.822

10.  A systematic literature review of individuals' perspectives on broad consent and data sharing in the United States.

Authors:  Nanibaa' A Garrison; Nila A Sathe; Armand H Matheny Antommaria; Ingrid A Holm; Saskia C Sanderson; Maureen E Smith; Melissa L McPheeters; Ellen W Clayton
Journal:  Genet Med       Date:  2015-11-19       Impact factor: 8.822

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  1 in total

Review 1.  Individual differences and diversity in human physiological responses to light.

Authors:  Manuel Spitschan; Nayantara Santhi
Journal:  EBioMedicine       Date:  2022-01-10       Impact factor: 8.143

  1 in total

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