scholarly journals Building the Partners HealthCare Biobank at Partners Personalized Medicine: Informed Consent, Return of Research Results, Recruitment Lessons and Operational Considerations

2016 ◽  
Vol 6 (1) ◽  
pp. 2 ◽  
Author(s):  
Elizabeth Karlson ◽  
Natalie Boutin ◽  
Alison Hoffnagle ◽  
Nicole Allen
Keyword(s):  
Informed Consent ◽  
Personalized Medicine ◽  
Research Results ◽  
Return Of Research Results

Biobanks and the Return of Research Results: Out with the Old and in with the New?

2011 ◽  
Vol 39 (4) ◽  
pp. 614-620 ◽  
Author(s):  
Ma'n H. Zawati ◽  
Amélie Rioux
Keyword(s):  
Informed Consent ◽  
Biological Material ◽  
Research Results ◽  
Scientific Innovation ◽  
Legal Challenges ◽  
The World ◽  
Health And Disease ◽  
Return Of Research Results ◽  
Associated Data ◽  
Human Biological Material

In 2009, Time magazine named “biobanks” as one of the 10 ideas changing the world. These organized collections of human biological material and associated data have been identified as “vital research tools in the drive to uncover the consequences of human health and disease.” Since their inception, however, biobanks have faced ethical and legal challenges. Whether these pertain to informed consent, access by researchers, commercialization, confidentiality, or governance, biobanks must continue to address jurisdictional matters, operational difficulties, and normative frameworks that strive to stay abreast of current scientific innovation. Yet, with some biobanks now having completed their recruitment objectives and with research currently being performed on their data and samples, one topic has become the focus of ongoing debates: the return of research results to participants.

Return of Research Results to Study Participants

JAMA ◽  
2018 ◽  
Vol 320 (5) ◽  
pp. 435 ◽  
Author(s):  
Charlene A. Wong ◽  
Adrian F. Hernandez ◽  
Robert M. Califf
Keyword(s):  
Research Results ◽  
Return Of Research Results ◽  
Study Participants

scholarly journals Population studies: return of research results and incidental findings Policy Statement

2012 ◽  
Vol 21 (3) ◽  
pp. 245-247 ◽  
Author(s):  
Bartha Maria Knoppers ◽  
Mylène Deschênes ◽  
Ma’n H Zawati ◽  
Anne Marie Tassé
Keyword(s):  
Incidental Findings ◽  
Population Studies ◽  
Policy Statement ◽  
Research Results ◽  
Return Of Research Results

The return of research results to participants: Pilot questionnaire of adolescents and parents of children with cancer

2007 ◽  
Vol 48 (4) ◽  
pp. 441-446 ◽  
Author(s):  
C.V. Fernandez ◽  
D. Santor ◽  
C. Weijer ◽  
C. Strahlendorf ◽  
A. Moghrabi ◽  
...  
Keyword(s):  
Children With Cancer ◽  
Research Results ◽  
Return Of Research Results

scholarly journals Advances in Personalized Medicines along with Functional Genomics and Pharmacogenomics

2021 ◽  
Vol 11 (10) ◽  
pp. 941
Author(s):  
Su-Jun Lee
Keyword(s):  
Personalized Medicine ◽  
Functional Genomics ◽  
Human Genome ◽  
State Of The Art ◽  
Research Results ◽  
Art Research ◽  
Personalized Medicines

State-of-the-art research on the human genome has produced remarkable research achievements in pharmacogenomics and functional genomics, and these research results are making an invaluable contribution to the advancement of personalized medicine [...]

scholarly journals Becoming and being a biobank donor: The role of relationships and ethics

PLoS ONE ◽  
2020 ◽  
Vol 15 (11) ◽  
pp. e0242828
Author(s):  
Signe Mezinska ◽  
Jekaterina Kaleja ◽  
Ilze Mileiko
Keyword(s):  
Informed Consent ◽  
Ethical Issues ◽  
Family Members ◽  
Research Subjects ◽  
Structured Interviews ◽  
Research Results ◽  
General Data Protection Regulation ◽  
Related Data ◽  
Research Findings

Relational aspects, such as involvement of donor’s relatives or friends in the decision-making on participation in a research biobank, providing relatives’ health data to researchers, or sharing research findings with relatives should be considered when reflecting on ethical aspects of research biobanks. The aim of this paper is to explore what the role of donor’s relatives and friends is in the process of becoming and being a biobank donor and which ethical issues arise in this context. We performed qualitative analysis of 40 qualitative semi-structured interviews with biobank donors and researchers. The results show that relatedness to relatives or other types of close relationships played a significant role in the donors’ motivation to be involved in a biobank, risk-benefit assessment, and decisions on sharing information on research and its results. Interviewees mentioned ethical issues in the context of sharing relatives’ health-related data for research purposes and returning research findings that may affect their relatives. We conclude that the question of what information on family members may be shared with a biobank by research participants without informed consent of those relatives, and when family members become research subjects, lacks a clear answer and detailed guidelines, especially in the context of the introduction of the European Union’s (EU) General Data Protection Regulation. Researchers in Latvia and EU face ethical questions and dilemmas about returning research results and incidental findings to donors’ relatives, and donors need more information on sharing research results with relatives in the informed consent process.

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