Literature DB >> 19471310

Changing perspectives in biobank research: from individual rights to concerns about public health regarding the return of results.

Joanna Stjernschantz Forsberg1, Mats G Hansson, Stefan Eriksson.   

Abstract

During the past decade, various guidelines that imply a duty for researchers to disclose information obtained through research to participants have emerged. The character and extent of this obligation have been debated extensively, with much attention devoted to the decisiveness of the validity and utility of the results in question. The aim of this paper is to argue that individual results from research on materials stored in large-scale biobanks, consisting of samples taken within the healthcare system or of altruistically donated materials, should not be returned. We will defend the thesis that medical research on these biobanks should be viewed as a collective project to improve public health, and that available resources should be utilized to pursue this goal. We argue that there is a need for a change of perspectives. Medical research should not primarily be viewed as a danger that individuals must be protected from, but rather be recognized as constituting a necessary defense against current and future diseases. Research that bears the prospect of advancing medicine and that can be carried out at no risk to individuals should be endorsed and facilitated. This calls for a shift of focus from autonomy and individual rights toward collective responsibility and solidarity.

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Year:  2009        PMID: 19471310      PMCID: PMC2987027          DOI: 10.1038/ejhg.2009.87

Source DB:  PubMed          Journal:  Eur J Hum Genet        ISSN: 1018-4813            Impact factor:   4.246


  35 in total

1.  Disclosing individual genetic results to research participants.

Authors:  Vardit Ravitsky; Benjamin S Wilfond
Journal:  Am J Bioeth       Date:  2006 Nov-Dec       Impact factor: 11.229

2.  Letting the gene out of the bottle: a comment on returning individual research results to participants.

Authors:  Pilar N Ossorio
Journal:  Am J Bioeth       Date:  2006 Nov-Dec       Impact factor: 11.229

3.  Thresholds and boundaries in the disclosure of individual genetic research results.

Authors:  Lynn G Dressler; Eric T Juengst
Journal:  Am J Bioeth       Date:  2006 Nov-Dec       Impact factor: 11.229

4.  Relationships with test-tubes: where's the reciprocity?

Authors:  Kelly Fryer-Edwards; Stephanie M Fullerton
Journal:  Am J Bioeth       Date:  2006 Nov-Dec       Impact factor: 11.229

5.  Best laid plans for offering results go awry.

Authors:  Lisa S Parker
Journal:  Am J Bioeth       Date:  2006 Nov-Dec       Impact factor: 11.229

6.  Undesirable implications of disclosing individual genetic results to research participants.

Authors:  Leslie A Meltzer
Journal:  Am J Bioeth       Date:  2006 Nov-Dec       Impact factor: 11.229

7.  When do genetic researchers have a duty to recontact study participants?

Authors:  Christopher H Wade; Andrea L Kalfoglou
Journal:  Am J Bioeth       Date:  2006 Nov-Dec       Impact factor: 11.229

Review 8.  Should donors be allowed to give broad consent to future biobank research?

Authors:  Mats G Hansson; Joakim Dillner; Claus R Bartram; Joyce A Carlson; Gert Helgesson
Journal:  Lancet Oncol       Date:  2006-03       Impact factor: 41.316

Review 9.  Screening for hereditary hemochromatosis: a systematic review for the U.S. Preventive Services Task Force.

Authors:  Evelyn P Whitlock; Betsy A Garlitz; Emily L Harris; Tracy L Beil; Paula R Smith
Journal:  Ann Intern Med       Date:  2006-08-01       Impact factor: 25.391

10.  The emergence of an ethical duty to disclose genetic research results: international perspectives.

Authors:  Bartha Maria Knoppers; Yann Joly; Jacques Simard; Francine Durocher
Journal:  Eur J Hum Genet       Date:  2006-07-26       Impact factor: 4.246

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  30 in total

1.  Structuring public engagement for effective input in policy development on human tissue biobanking.

Authors:  Kieran C O'Doherty; A Hawkins
Journal:  Public Health Genomics       Date:  2010-04-15       Impact factor: 2.000

2.  Finding ways to improve the use of biobanks.

Authors:  Angelo Paradiso; Mats Hansson
Journal:  Nat Med       Date:  2013-07       Impact factor: 53.440

3.  Factors influencing public participation in biobanking.

Authors:  Mamoun Ahram; Areej Othman; Manal Shahrouri; Ebtihal Mustafa
Journal:  Eur J Hum Genet       Date:  2013-08-07       Impact factor: 4.246

Review 4.  Population biobanks and returning individual research results: mission impossible or new directions?

Authors:  Susan E Wallace; Alastair Kent
Journal:  Hum Genet       Date:  2011-06-05       Impact factor: 4.132

Review 5.  The Bio-PIN: a concept to improve biobanking.

Authors:  J J Nietfeld; Jeremy Sugarman; Jan-Eric Litton
Journal:  Nat Rev Cancer       Date:  2011-03-17       Impact factor: 60.716

6.  Returning Results: Let's Be Honest!

Authors:  Bernice S Elger; Eva De Clercq
Journal:  Genet Test Mol Biomarkers       Date:  2017-02-24

7.  Reporting actionable research results: shared secrets can save lives.

Authors:  Lawrence E Hunter; Christian Hopfer; Sharon F Terry; Marilyn E Coors
Journal:  Sci Transl Med       Date:  2012-07-18       Impact factor: 17.956

8.  Return of Genetic Research Results to Participants and Families: IRB Perspectives and Roles.

Authors:  Laura M Beskow; P Pearl O'Rourke
Journal:  J Law Med Ethics       Date:  2015       Impact factor: 1.718

9.  New directions in childhood obesity research: how a comprehensive biorepository will allow better prediction of outcomes.

Authors:  Matthew A Sabin; Susan L Clemens; Richard Saffery; Zoe McCallum; Michele W Campbell; Wieland Kiess; Nancy A Crimmins; Jessica G Woo; Gary M Leong; George A Werther; Obioha C Ukoumunne; Melissa A Wake
Journal:  BMC Med Res Methodol       Date:  2010-10-22       Impact factor: 4.615

10.  Planning for translational research in genomics.

Authors:  Naomi Hawkins; Jantina de Vries; Paula Boddington; Jane Kaye; Catherine Heeney
Journal:  Genome Med       Date:  2009-09-29       Impact factor: 11.117

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