Literature DB >> 25074323

Extending the surrogacy analogy: applying the advance directive model to biobanks.

Stephanie Solomon1, Ann Mongoven.   

Abstract

Biobank donors and biobank governance face a conceptual challenge akin to clinical patients and their designated surrogate decision-makers, the necessity of making decisions and policies now that must be implemented under future unknown circumstances. We propose that biobanks take advantage of this parallel to learn lessons from the historical trajectory of advance directives and develop models analogous to current 'best practice' advance directives such as Values Histories and TheFive Wishes. We suggest how such models could improve biobanks' engagement both with communities and with individual donors by being more honest about the limits of current disclosure and eliciting information to ensure the protection of donor interests more robustly through time than current 'informed consent' processes in biobanking.
© 2014 S. Karger AG, Basel.

Entities:  

Mesh:

Year:  2014        PMID: 25074323      PMCID: PMC4289417          DOI: 10.1159/000364993

Source DB:  PubMed          Journal:  Public Health Genomics        ISSN: 1662-4246            Impact factor:   2.000


  26 in total

1.  Actual and perceived stability of preferences for life-sustaining treatment.

Authors:  R M Gready; P H Ditto; J H Danks; K M Coppola; L K Lockhart; W D Smucker
Journal:  J Clin Ethics       Date:  2000

2.  Narrative inquiry: a method for eliciting advance health care directives.

Authors:  Rivka Grundstein-Amado
Journal:  Humane Med       Date:  1992-01

3.  The values history: an innovation in surrogate medical decision-making.

Authors:  P Lambert; J M Gibson; P Nathanson
Journal:  Law Med Health Care       Date:  1990

4.  From newborn screening to population health research: implementation of the Michigan BioTrust for health.

Authors:  Carrie Langbo; Janice Bach; Mary Kleyn; Frances Pouch Downes
Journal:  Public Health Rep       Date:  2013 Sep-Oct       Impact factor: 2.792

5.  Family decision-making to withdraw life-sustaining treatments from hospitalized patients.

Authors:  V P Tilden; S W Tolle; C A Nelson; J Fields
Journal:  Nurs Res       Date:  2001 Mar-Apr       Impact factor: 2.381

Review 6.  Advance care planning: pitfalls, progress, promise.

Authors:  T J Prendergast
Journal:  Crit Care Med       Date:  2001-02       Impact factor: 7.598

7.  The Medical Directive. A new comprehensive advance care document.

Authors:  L L Emanuel; E J Emanuel
Journal:  JAMA       Date:  1989-06-09       Impact factor: 56.272

8.  Reconsidering the value of consent in biobank research.

Authors:  Judy Allen; Beverley McNamara
Journal:  Bioethics       Date:  2011-03       Impact factor: 1.898

9.  Stability of choices about life-sustaining treatments.

Authors:  M Danis; J Garrett; R Harris; D L Patrick
Journal:  Ann Intern Med       Date:  1994-04-01       Impact factor: 25.391

10.  Active choice but not too active: public perspectives on biobank consent models.

Authors:  Christian M Simon; Jamie L'heureux; Jeffrey C Murray; Patricia Winokur; George Weiner; Elizabeth Newbury; Laura Shinkunas; Bridget Zimmerman
Journal:  Genet Med       Date:  2011-09       Impact factor: 8.822

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  1 in total

1.  Effect of deliberation on the public's attitudes toward consent policies for biobank research.

Authors:  Tom Tomlinson; Raymond G De Vries; H Myra Kim; Linda Gordon; Kerry A Ryan; Chris D Krenz; Scott Jewell; Scott Y H Kim
Journal:  Eur J Hum Genet       Date:  2018-01-18       Impact factor: 4.246

  1 in total

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