Start me up: ways to encourage sharing of genomic information with research participants
Author:
Publisher
Springer Science and Business Media LLC
Subject
Genetics(clinical),Genetics,Molecular Biology
Link
http://www.nature.com/articles/nrg3981.pdf
Reference5 articles.
1. Solomon, D. J. & Bjork, B. C. Publication fees in open access publishing: sources of funding and factors influencing choice of journal. J. Am. Soc. Inf. Sci. Technol. 63, 98–107 (2012).
2. Lunshof, J. E., Church, G. M. & Prainsack, B. Information access. Raw personal data: providing access. Science 343, 373–374 (2014).
3. Middleton, A. et al. No expectation to share incidental findings in genomic research. Lancet 385, 1289–1290 (2015).
4. Middleton, A. et al. Potential research participants support the return of raw sequence data. J. Med. Genet. http://dx.doi.org/10.1136/jmedgenet-2015-103119 (2015).
5. Koenig, B. A. Have we asked too much of consent? Hastings Cent. Rep. 44, 33–34 (2014).
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1. Do patients and research subjects have a right to receive their genomic raw data? An ethical and legal analysis;BMC Medical Ethics;2020-01-16
2. Assessing the Psychological Impact of Genetic Susceptibility Testing;Hastings Center Report;2019-05
3. Participant-Partners in Genetic Research: An Exome Study with Families of Children with Unexplained Medical Conditions;Journal of Participatory Medicine;2018-01-30
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