Literature DB >> 29390947

Broad Consent for Research on Biospecimens: The Views of Actual Donors at Four U.S. Medical Centers.

Teddy D Warner1, Carol J Weil2, Christopher Andry3, Howard B Degenholtz4, Lisa Parker4, Latarsha J Carithers5, Michelle Feige6, David Wendler5, Rebecca D Pentz7.   

Abstract

Commentators are concerned that broad consent may not provide biospecimen donors with sufficient information regarding possible future research uses of their tissue. We surveyed with interviews 302 cancer patients who had recently provided broad consent at four diverse academic medical centers. The majority of donors believed that the consent form provided them with sufficient information regarding future possible uses of their biospecimens. Donors expressed very positive views regarding tissue donation in general and endorsed the use of their biospecimens in future research across a wide range of contexts. Concerns regarding future uses were limited to for-profit research and research by investigators in other countries. These results support the use of broad consent to store and use biological samples in future research.

Entities:  

Keywords:  biobanking; biospecimen donor; broad consent; ethical issues; informed consent; survey

Mesh：

Year:  2018        PMID： 29390947      PMCID： PMC5869128          DOI： 10.1177/1556264617751204

Source DB:  PubMed          Journal:  J Empir Res Hum Res Ethics        ISSN： 1556-2646            Impact factor:   1.742


  51 in total

1.  Informed consent and biobanks: a population-based study of attitudes towards tissue donation for genetic research.

Authors:  Klaus Hoeyer; Bert-Ove Olofsson; Tom Mjörndal; Niels Lynöe
Journal:  Scand J Public Health       Date:  2004       Impact factor: 3.021

2.  Research with stored biological samples: what do research participants want?

Authors:  Donna T Chen; Donald L Rosenstein; Palaniappan Muthappan; Susan G Hilsenbeck; Franklin G Miller; Ezekiel J Emanuel; David Wendler
Journal:  Arch Intern Med       Date:  2005-03-28

3.  Testing an online, dynamic consent portal for large population biobank research.

Authors:  Daniel B Thiel; Jodyn Platt; Tevah Platt; Susan B King; Nicole Fisher; Robert Shelton; Sharon L R Kardia
Journal:  Public Health Genomics       Date:  2014-10-30       Impact factor: 2.000

4.  Return of genomic results to research participants: the floor, the ceiling, and the choices in between.

Authors:  Gail P Jarvik; Laura M Amendola; Jonathan S Berg; Kyle Brothers; Ellen W Clayton; Wendy Chung; Barbara J Evans; James P Evans; Stephanie M Fullerton; Carlos J Gallego; Nanibaa' A Garrison; Stacy W Gray; Ingrid A Holm; Iftikhar J Kullo; Lisa Soleymani Lehmann; Cathy McCarty; Cynthia A Prows; Heidi L Rehm; Richard R Sharp; Joseph Salama; Saskia Sanderson; Sara L Van Driest; Marc S Williams; Susan M Wolf; Wendy A Wolf; Wylie Burke
Journal:  Am J Hum Genet       Date:  2014-05-08       Impact factor: 11.025

5.  Respecting donors to biobank research.

Authors:  Tom Tomlinson
Journal:  Hastings Cent Rep       Date:  2012-12-18       Impact factor: 2.683

Review 6.  Ethical, legal, and counseling challenges surrounding the return of genetic results in oncology.

Authors:  Martijn P Lolkema; Christa G Gadellaa-van Hooijdonk; Annelien L Bredenoord; Peter Kapitein; Nancy Roach; Edwin Cuppen; Nine V Knoers; Emile E Voest
Journal:  J Clin Oncol       Date:  2013-04-15       Impact factor: 44.544

7.  Patients' views on identifiability of samples and informed consent for genetic research.

Authors:  Sara Chandros Hull; Richard R Sharp; Jeffrey R Botkin; Mark Brown; Mark Hughes; Jeremy Sugarman; Debra Schwinn; Pamela Sankar; Dragana Bolcic-Jankovic; Brian R Clarridge; Benjamin S Wilfond
Journal:  Am J Bioeth       Date:  2008-10       Impact factor: 11.229

Review 8.  Research participants' perceptions and views on consent for biobank research: a review of empirical data and ethical analysis.

Authors:  Flavio D'Abramo; Jan Schildmann; Jochen Vollmann
Journal:  BMC Med Ethics       Date:  2015-09-09       Impact factor: 2.652

9.  Understanding the Public's Reservations about Broad Consent and Study-By-Study Consent for Donations to a Biobank: Results of a National Survey.

Authors:  Raymond Gene De Vries; Tom Tomlinson; Hyungjin Myra Kim; Chris Krenz; Diana Haggerty; Kerry A Ryan; Scott Y H Kim
Journal:  PLoS One       Date:  2016-07-14       Impact factor: 3.240

10.  Research ethics recommendations for whole-genome research: consensus statement.

Authors:  Timothy Caulfield; Amy L McGuire; Mildred Cho; Janet A Buchanan; Michael M Burgess; Ursula Danilczyk; Christina M Diaz; Kelly Fryer-Edwards; Shane K Green; Marc A Hodosh; Eric T Juengst; Jane Kaye; Laurence Kedes; Bartha Maria Knoppers; Trudo Lemmens; Eric M Meslin; Juli Murphy; Robert L Nussbaum; Margaret Otlowski; Daryl Pullman; Peter N Ray; Jeremy Sugarman; Michael Timmons
Journal:  PLoS Biol       Date:  2008-03-25       Impact factor: 8.029
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  13 in total

Review 1.  Opportunities and Risks for Research Biobanks in the COVID-19 Era and Beyond.

Authors:  Daniel Simeon-Dubach; Marianne K Henderson
Journal:  Biopreserv Biobank       Date:  2020-10-08       Impact factor: 2.300

2.  Enhancing Cooperation Between Academic Biobanks and Biomedical Industry: Better Mutual Understanding and New Collaborative Models Are Needed.

Authors:  Daniel Simeon-Dubach; Michael H Roehrl; Paul Hofman; Pascal Puchois
Journal:  Biopreserv Biobank       Date:  2020-02-11       Impact factor: 2.300

3.  Racial/Ethnic Differences in Comprehension of Biospecimen Collection: a Nationwide University of Rochester Cancer Center NCI Community Oncology Research Program Study.

Authors:  Matthew Asare; Charles E Heckler; Eva Culakova; Charles S Kamen; Amber S Kleckner; Lori M Minasian; David S Wendler; Michelle Feige; Carol J Weil; Joan Long; Sharon K Cole; Adedayo A Onitilo; Luke J Peppone; Gary R Morrow; Michelle C Janelsins
Journal:  J Cancer Educ       Date:  2020-04       Impact factor: 2.037

4.  Patient perspectives on compensation for biospecimen donation.

Authors:  Samuel C Allen; Minisha Lohani; Kristopher A Hendershot; Travis R Deal; Taylor White; Margie D Dixon; Rebecca D Pentz
Journal:  AJOB Empir Bioeth       Date:  2018-04-26

5.  Model framework for governance of genomic research and biobanking in Africa - a content description.

Authors:  Aminu Yakubu; Paulina Tindana; Alice Matimba; Katherine Littler; Nchangwi Syntia Munung; Ebony Madden; Ciara Staunton; Jantina De Vries
Journal:  AAS Open Res       Date:  2018-04-18

6.  Bioethical reflexivity and requirements of valid consent: conceptual tools.

Authors:  John Barugahare
Journal:  BMC Med Ethics       Date:  2019-07-04       Impact factor: 2.652

7.  Patient Perspectives About Decisions to Share Medical Data and Biospecimens for Research.

Authors:  Jihoon Kim; Hyeoneui Kim; Elizabeth Bell; Tyler Bath; Paulina Paul; Anh Pham; Xiaoqian Jiang; Kai Zheng; Lucila Ohno-Machado
Journal:  JAMA Netw Open       Date:  2019-08-02

Review 8.  Ethical Challenges in COVID-19 Biospecimen Research: Perspectives From Institutional Review Board Members and Bioethicists.

Authors:  Maria I Lapid; Karen M Meagher; Hannah C Giunta; Bart L Clarke; Yves Ouellette; Tamyra L Armbrust; Richard R Sharp; R Scott Wright
Journal:  Mayo Clin Proc       Date:  2020-10-23       Impact factor: 7.616

9.  The Impact of Communicating Uncertainty on Public Responses to Precision Medicine Research.

Authors:  Chelsea L Ratcliff; Bob Wong; Jakob D Jensen; Kimberly A Kaphingst
Journal:  Ann Behav Med       Date:  2021-10-27

10.  Context-Relative Norms Determine the Appropriate Type of Consent in Clinical Biobanks: Towards a Potential Solution for the Discrepancy between the General Data Protection Regulation and the European Data Protection Board on Requirements for Consent.

Authors:  R Indrakusuma; S Kalkman; M J W Koelemay; R Balm; D L Willems
Journal:  Sci Eng Ethics       Date:  2020-10-13       Impact factor: 3.525
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