Literature DB >> 26479568

International Policies on Sharing Genomic Research Results with Relatives: Approaches to Balancing Privacy with Access.

Rebecca Branum1, Susan M Wolf2.   

Abstract

Returning genetic research results to relatives raises complex issues. In order to inform the U.S. debate, this paper analyzes international law and policies governing the sharing of genetic research results with relatives and identifies key themes and lessons. The laws and policies from other countries demonstrate a range of approaches to balancing individual privacy and autonomy with family access for health benefit, offering important lessons for further development of approaches in the United States.
© 2015 American Society of Law, Medicine & Ethics, Inc.

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Mesh：

Year:  2015        PMID： 26479568      PMCID： PMC4617202          DOI： 10.1111/jlme.12301

Source DB:  PubMed          Journal:  J Law Med Ethics        ISSN： 1073-1105            Impact factor:   1.718


  21 in total

1.  HIPAA Privacy Rule 2.0.

Authors:  Mark A Rothstein
Journal:  J Law Med Ethics       Date:  2013       Impact factor: 1.718

2.  Anticipate and communicate: Ethical management of incidental and secondary findings in the clinical, research, and direct-to-consumer contexts (December 2013 report of the Presidential Commission for the Study of Bioethical Issues).

Authors:  Christine Weiner
Journal:  Am J Epidemiol       Date:  2014-08-22       Impact factor: 4.897

3.  What does the duty to warn require?

Authors:  Seema K Shah; Sara Chandros Hull; Michael A Spinner; Benjamin E Berkman; Lauren A Sanchez; Ruquyyah Abdul-Karim; Amy P Hsu; Reginald Claypool; Steven M Holland
Journal:  Am J Bioeth       Date:  2013       Impact factor: 11.229

4.  What should the law say about disclosure of genetic information to relatives?

Authors:  E W Clayton
Journal:  J Health Care Law Policy       Date:  1998

5.  ASHG report. Statement on informed consent for genetic research. The American Society of Human Genetics.

Authors: 
Journal:  Am J Hum Genet       Date:  1996-08       Impact factor: 11.025

6.  ASHG statement. Professional disclosure of familial genetic information. The American Society of Human Genetics Social Issues Subcommittee on Familial Disclosure.

Authors: 
Journal:  Am J Hum Genet       Date:  1998-02       Impact factor: 11.025

7.  Modifications to the HIPAA Privacy, Security, Enforcement, and Breach Notification rules under the Health Information Technology for Economic and Clinical Health Act and the Genetic Information Nondiscrimination Act; other modifications to the HIPAA rules.

Authors: 
Journal:  Fed Regist       Date:  2013-01-25

8.  CLIA program and HIPAA privacy rule; patients' access to test reports. Final rule.

Authors: 
Journal:  Fed Regist       Date:  2014-02-06

9.  The "duty to warn" a patient's family members about hereditary disease risks.

Authors:  Kenneth Offit; Elizabeth Groeger; Sam Turner; Eve A Wadsworth; Mary A Weiser
Journal:  JAMA       Date:  2004-09-22       Impact factor: 56.272

10.  Population studies: return of research results and incidental findings Policy Statement.

Authors:  Bartha Maria Knoppers; Mylène Deschênes; Ma'n H Zawati; Anne Marie Tassé
Journal:  Eur J Hum Genet       Date:  2012-07-11       Impact factor: 4.246
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  10 in total

Review 1.  Sharing Data to Build a Medical Information Commons: From Bermuda to the Global Alliance.

Authors:  Robert Cook-Deegan; Rachel A Ankeny; Kathryn Maxson Jones
Journal:  Annu Rev Genomics Hum Genet       Date:  2017-04-17       Impact factor: 8.929

2.  "If relatives inherited the gene, they should inherit the data." Bringing the family into the room where bioethics happens.

Authors:  Deborah R Gordon; Barbara A Koenig
Journal:  New Genet Soc       Date:  2021-12-13

3.  Comparing the attitudes of physicians and non-physicians toward communicating a patient's BRCA1 mutation to a first-degree relative against a patient's wishes.

Authors:  Jane E Zebrack; Wei Yang; Matthew Milone; Max J Coppes
Journal:  J Community Genet       Date:  2022-05-21

4.  Clinical Sequencing Exploratory Research Consortium: Accelerating Evidence-Based Practice of Genomic Medicine.

Authors:  Robert C Green; Katrina A B Goddard; Gail P Jarvik; Laura M Amendola; Paul S Appelbaum; Jonathan S Berg; Barbara A Bernhardt; Leslie G Biesecker; Sawona Biswas; Carrie L Blout; Kevin M Bowling; Kyle B Brothers; Wylie Burke; Charlisse F Caga-Anan; Arul M Chinnaiyan; Wendy K Chung; Ellen W Clayton; Gregory M Cooper; Kelly East; James P Evans; Stephanie M Fullerton; Levi A Garraway; Jeremy R Garrett; Stacy W Gray; Gail E Henderson; Lucia A Hindorff; Ingrid A Holm; Michelle Huckaby Lewis; Carolyn M Hutter; Pasi A Janne; Steven Joffe; David Kaufman; Bartha M Knoppers; Barbara A Koenig; Ian D Krantz; Teri A Manolio; Laurence McCullough; Jean McEwen; Amy McGuire; Donna Muzny; Richard M Myers; Deborah A Nickerson; Jeffrey Ou; Donald W Parsons; Gloria M Petersen; Sharon E Plon; Heidi L Rehm; J Scott Roberts; Dan Robinson; Joseph S Salama; Sarah Scollon; Richard R Sharp; Brian Shirts; Nancy B Spinner; Holly K Tabor; Peter Tarczy-Hornoch; David L Veenstra; Nikhil Wagle; Karen Weck; Benjamin S Wilfond; Kirk Wilhelmsen; Susan M Wolf; Julia Wynn; Joon-Ho Yu
Journal:  Am J Hum Genet       Date:  2016-05-12       Impact factor: 11.025

5.  Communicating BRCA research results to patients enrolled in international clinical trials: lessons learnt from the AGO-OVAR 16 study.

Authors:  David J Pulford; Philipp Harter; Anne Floquet; Catherine Barrett; Dong Hoon Suh; Michael Friedlander; José Angel Arranz; Kosei Hasegawa; Hiroomi Tada; Peter Vuylsteke; Mansoor R Mirza; Nicoletta Donadello; Giovanni Scambia; Toby Johnson; Charles Cox; John K Chan; Martin Imhof; Thomas J Herzog; Paula Calvert; Pauline Wimberger; Dominique Berton-Rigaud; Myong Cheol Lim; Gabriele Elser; Chun-Fang Xu; Andreas du Bois
Journal:  BMC Med Ethics       Date:  2016-10-21       Impact factor: 2.652

6.  Approaching confidentiality at a familial level in genomic medicine: a focus group study with healthcare professionals.

Authors:  Sandi Dheensa; Angela Fenwick; Anneke Lucassen
Journal:  BMJ Open       Date:  2017-02-03       Impact factor: 2.692

7.  Alerting relatives about heritable risks: the limits of confidentiality.

Authors:  Anneke Lucassen; Roy Gilbar
Journal:  BMJ       Date:  2018-04-05

8.  Tensions in ethics and policy created by National Precision Medicine Programs.

Authors:  Jusaku Minari; Kyle B Brothers; Michael Morrison
Journal:  Hum Genomics       Date:  2018-04-17       Impact factor: 4.639

9.  Return of individual genomic research results: are laws and policies keeping step?

Authors:  Adrian Thorogood; Gratien Dalpé; Bartha Maria Knoppers
Journal:  Eur J Hum Genet       Date:  2019-01-08       Impact factor: 4.246

10.  Ethical Principles, Constraints and Opportunities in Clinical Proteomics.

Authors:  Sebastian Porsdam Mann; Peter V Treit; Philipp E Geyer; Gilbert S Omenn; Matthias Mann
Journal:  Mol Cell Proteomics       Date:  2021-01-14       Impact factor: 5.911
  10 in total

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