Preferences Regarding Return of Genomic Results to Relatives of Research Participants, Including after Participant Death: Empirical Results from a Cancer Biobank

Carmen Radecki Breitkopf; Gloria M. Petersen; Susan M. Wolf; Kari G. Chaffee; Marguerite E. Robinson; Deborah R. Gordon; Noralane M. Lindor; Barbara A. Koenig

doi:10.1111/jlme.12289

Preferences Regarding Return of Genomic Results to Relatives of Research Participants, Including after Participant Death: Empirical Results from a Cancer Biobank

Carmen Radecki Breitkopf, Gloria M. Petersen, Susan M. Wolf, Kari G. Chaffee, Marguerite E. Robinson, Deborah R. Gordon, Noralane M. Lindor, Barbara A. Koenig

Research output: Contribution to journal › Article › peer-review

19 Scopus citations

Abstract

Data are lacking with regard to participants' perspectives on return of genetic research results to relatives, including after the participant's death. This paper reports descriptive results from 3,630 survey respondents: 464 participants in a pancreatic cancer biobank, 1,439 family registry participants, and 1,727 healthy individuals. Our findings indicate that most participants would feel obligated to share their results with blood relatives while alive and would want results to be shared with relatives after their death.

Original language	English (US)
Pages (from-to)	464-475
Number of pages	12
Journal	Journal of Law, Medicine and Ethics
Volume	43
Issue number	3
DOIs	https://doi.org/10.1111/jlme.12289
State	Published - Sep 1 2015

ASJC Scopus subject areas

General Medicine

Access to Document

10.1111/jlme.12289

Cite this

Breitkopf, C. R., Petersen, G. M., Wolf, S. M., Chaffee, K. G., Robinson, M. E., Gordon, D. R., Lindor, N. M., & Koenig, B. A. (2015). Preferences Regarding Return of Genomic Results to Relatives of Research Participants, Including after Participant Death: Empirical Results from a Cancer Biobank. Journal of Law, Medicine and Ethics, 43(3), 464-475. https://doi.org/10.1111/jlme.12289

Preferences Regarding Return of Genomic Results to Relatives of Research Participants, Including after Participant Death: Empirical Results from a Cancer Biobank. / Breitkopf, Carmen Radecki ; Petersen, Gloria M.; Wolf, Susan M. et al.
In: Journal of Law, Medicine and Ethics, Vol. 43, No. 3, 01.09.2015, p. 464-475.

Research output: Contribution to journal › Article › peer-review

Breitkopf, CR , Petersen, GM, Wolf, SM, Chaffee, KG, Robinson, ME, Gordon, DR, Lindor, NM & Koenig, BA 2015, 'Preferences Regarding Return of Genomic Results to Relatives of Research Participants, Including after Participant Death: Empirical Results from a Cancer Biobank', Journal of Law, Medicine and Ethics, vol. 43, no. 3, pp. 464-475. https://doi.org/10.1111/jlme.12289

@article{218eb8c3151d46f88e1f1d75bfd6e8bd,

title = "Preferences Regarding Return of Genomic Results to Relatives of Research Participants, Including after Participant Death: Empirical Results from a Cancer Biobank",

abstract = "Data are lacking with regard to participants' perspectives on return of genetic research results to relatives, including after the participant's death. This paper reports descriptive results from 3,630 survey respondents: 464 participants in a pancreatic cancer biobank, 1,439 family registry participants, and 1,727 healthy individuals. Our findings indicate that most participants would feel obligated to share their results with blood relatives while alive and would want results to be shared with relatives after their death.",

author = "Breitkopf, {Carmen Radecki} and Petersen, {Gloria M.} and Wolf, {Susan M.} and Chaffee, {Kari G.} and Robinson, {Marguerite E.} and Gordon, {Deborah R.} and Lindor, {Noralane M.} and Koenig, {Barbara A.}",

note = "Publisher Copyright: {\textcopyright} 2015 American Society of Law, Medicine & Ethics, Inc.",

year = "2015",

month = sep,

day = "1",

doi = "10.1111/jlme.12289",

language = "English (US)",

volume = "43",

pages = "464--475",

journal = "Journal of Law, Medicine and Ethics",

issn = "1073-1105",

publisher = "SAGE Publications Inc.",

number = "3",

}

TY - JOUR

T1 - Preferences Regarding Return of Genomic Results to Relatives of Research Participants, Including after Participant Death

T2 - Empirical Results from a Cancer Biobank

AU - Breitkopf, Carmen Radecki

AU - Petersen, Gloria M.

AU - Wolf, Susan M.

AU - Chaffee, Kari G.

AU - Robinson, Marguerite E.

AU - Gordon, Deborah R.

AU - Lindor, Noralane M.

AU - Koenig, Barbara A.

PY - 2015/9/1

Y1 - 2015/9/1

N2 - Data are lacking with regard to participants' perspectives on return of genetic research results to relatives, including after the participant's death. This paper reports descriptive results from 3,630 survey respondents: 464 participants in a pancreatic cancer biobank, 1,439 family registry participants, and 1,727 healthy individuals. Our findings indicate that most participants would feel obligated to share their results with blood relatives while alive and would want results to be shared with relatives after their death.

AB - Data are lacking with regard to participants' perspectives on return of genetic research results to relatives, including after the participant's death. This paper reports descriptive results from 3,630 survey respondents: 464 participants in a pancreatic cancer biobank, 1,439 family registry participants, and 1,727 healthy individuals. Our findings indicate that most participants would feel obligated to share their results with blood relatives while alive and would want results to be shared with relatives after their death.

UR - http://www.scopus.com/inward/record.url?scp=84944681836&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=84944681836&partnerID=8YFLogxK

U2 - 10.1111/jlme.12289

DO - 10.1111/jlme.12289

M3 - Article

C2 - 26479556

AN - SCOPUS:84944681836

SN - 1073-1105

VL - 43

SP - 464

EP - 475

JO - Journal of Law, Medicine and Ethics

JF - Journal of Law, Medicine and Ethics

IS - 3

ER -

Preferences Regarding Return of Genomic Results to Relatives of Research Participants, Including after Participant Death: Empirical Results from a Cancer Biobank

Abstract

ASJC Scopus subject areas

Access to Document

Other files and links

Fingerprint

Cite this