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Literature DB >> 26184591

Start me up: ways to encourage sharing of genomic information with research participants.

Abstract

Personalized and precision medicine initiatives explicitly call for researchers to treat research participants as partners. One way to realize that goal is by returning individual research results to participants. I propose a number of concrete steps that could facilitate that process.

Entities: Species

Mesh：

Year: 2015 PMID： 26184591 DOI： 10.1038/nrg3981

Source DB: PubMed Journal: Nat Rev Genet ISSN： 1471-0056 Impact factor: 53.242

4 in total

1. No expectation to share incidental findings in genomic research.

Authors: Anna Middleton; Katherine I Morley; Eugene Bragin; Helen V Firth; Matthew E Hurles; Caroline F Wright; Michael Parker
Journal: Lancet Date: 2014-12-17 Impact factor: 79.321

2. Information access. Raw personal data: providing access.

Authors: Jeantine E Lunshof; George M Church; Barbara Prainsack
Journal: Science Date: 2014-01-24 Impact factor: 47.728

3. Have we asked too much of consent?

Authors: Barbara A Koenig
Journal: Hastings Cent Rep Date: 2014 Jul-Aug Impact factor: 2.683

4. Potential research participants support the return of raw sequence data.

Authors: Anna Middleton; Caroline F Wright; Katherine I Morley; Eugene Bragin; Helen V Firth; Matthew E Hurles; Michael Parker
Journal: J Med Genet Date: 2015-05-20 Impact factor: 6.318

4 in total

3 in total

Start me up: ways to encourage sharing of genomic information with research participants.

1. No expectation to share incidental findings in genomic research.

2. Information access. Raw personal data: providing access.

3. Have we asked too much of consent?

4. Potential research participants support the return of raw sequence data.

1. Assessing the Psychological Impact of Genetic Susceptibility Testing.

2. The Future of Patient Engagement in the Governance of Shared Data.

3. Do patients and research subjects have a right to receive their genomic raw data? An ethical and legal analysis.