Should Researchers Offer Results to Family Members of Cancer Biobank Participants? A Mixed-Methods Study of Proband and Family Preferences-Reference-Cited by-同舟云学术

Should Researchers Offer Results to Family Members of Cancer Biobank Participants? A Mixed-Methods Study of Proband and Family Preferences

Published:2018-12-31 Issue:1 Volume:10 Page:1-22
ISSN:2329-4515
Container-title:AJOB Empirical Bioethics
language:en
Short-container-title:AJOB Empirical Bioethics

Author:

Gordon Deborah R.¹,Radecki Breitkopf Carmen²,Robinson Marguerite³,Petersen Wesley O.⁴,Egginton Jason S.⁵,Chaffee Kari G.²,Petersen Gloria M.²,Wolf Susan M.⁶,Koenig Barbara A.⁷

Affiliation:

1. Department of Anthropology, History and Social Medicine, University of California, San Francisco;

2. Department of Health Sciences Research, Mayo Clinic;

3. Biomedical Ethics Research, Mayo Clinic;

4. Office of Health Disparities Research, Mayo Clinic;

5. Center for the Science of Health Care Delivery, Mayo Clinic;

6. University of Minnesota Law School;

7. Program in Bioethics, University of California, San Francisco

Funder

National Cancer Institute (NCI) and National Human Genomic Research Institute

NHGRI

NCI

NHGRI Center of Excellence in ELSI Research

Mayo Clinic pancreatic cancer patient biobank and family research registry

Publisher

Informa UK Limited

Subject

Health Policy,Philosophy,Health (social science)

Link

https://www.tandfonline.com/doi/pdf/10.1080/23294515.2018.1546241

Reference76 articles.

1. Biobank Participants' Preferences for Disclosure of Genetic Research Results: Perspectives From the OurGenes, OurHealth, OurCommunity Project

2. Risky Medicine

3. The practical ethics of genetic responsibility: Non-disclosure and the autonomy of affect

4. Kinscapes, timescapes and genescapes: families living with genetic risk

Cited by 13 articles. 订阅此论文施引文献订阅此论文施引文献，注册后可以免费订阅5篇论文的施引文献，订阅后可以查看论文全部施引文献

1. Systematic review of the uptake and outcomes from returning secondary findings to adult participants in research genomic testing;Journal of Genetic Counseling;2024-01-10

2. Development of a digital risk-prediction tool based on family health history for the general population: legal and ethical challenges (Preprint);2023-10-23

3. “Out of the blue”: A qualitative study exploring the experiences of women and next of kin receiving unexpected results from BRA‐STRAP research gene panel testing;Journal of Genetic Counseling;2023-10-21

4. Pancreatic Cancer Health Disparity: Pharmacologic Anthropology;Cancers;2023-10-20

5. Return of Results in Genomic Research Using Large-Scale or Whole Genome Sequencing: Toward a New Normal;Annual Review of Genomics and Human Genetics;2023-08-25