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BMC Med Ethics. 2018 Jun 18;19(1):61. doi: 10.1186/s12910-018-0310-5.

Ethical concerns on sharing genomic data including patients' family members.

Author information

1
Department of Public Policy, The Institute of Medical Science, The University of Tokyo, Shirokanedai 4-6-1, Minato-ku, Tokyo, 108-8639, Japan. ktakashima-tky@umin.ac.jp.
2
Medical Genomics Center, National Center for Global Health and Medicine, 1-21-1 Toyama, Shinjuku-ku, Tokyo, 162-8655, Japan. ktakashima-tky@umin.ac.jp.
3
Department of Regional Policy, Faculty of Regional Sciences, Tottori University, 4-101 Koyama-cho Minami, Tottori, 680-8551, Japan.
4
Cancer Precision Medicine Center, Japanese Foundation for Cancer Research, 3-8-31, Ariake, Koto-ku, Tokyo, 135-8550, Japan.
5
National Cancer Center Research Institute, 5-1-1 Tsukiji, Chuo-ku, Tokyo, 104-0045, Japan.
6
Cancer Institute, Japanese Foundation for Cancer Research, 3-8-31, Ariake, Koto-ku, Tokyo, 135-8550, Japan.
7
Department of Public Policy, The Institute of Medical Science, The University of Tokyo, Shirokanedai 4-6-1, Minato-ku, Tokyo, 108-8639, Japan.

Abstract

BACKGROUND:

Platforms for sharing genomic and phenotype data have been developed to promote genomic research, while maximizing the utility of existing datasets and minimizing the burden on participants. The value of genomic analysis of trios or family members has increased, especially in rare diseases and cancers. This article aims to argue the necessity of protection when sharing data from both patients and family members.

MAIN TEXT:

Sharing patients' and family members' data collectively raises an ethical tension between the value of datasets and the rights of participants, and increases the risk of re-identification. However, current data-sharing policies have no specific safeguards or provisions for familial data sharing. A quantitative survey conducted on 10,881 general adults in Japan indicated that they expected stronger protection mechanisms when their family members' clinical and/or genomic data were shared together, as compared to when only their data were shared. A framework that respects decision-making and the right of withdrawal of participants, including family members, along with ensuring usefulness and security of data is needed. To enable this, we propose recommendations on ancillary safeguards for familial data sharing according to the stakeholders, namely, initial researchers, genomic researchers, data submitters, database operators, institutional review boards, and the public and participants.

CONCLUSIONS:

Families have played significant roles in genetic research, and its value is re-illuminated in the era of genomic medicine. It is important to make progress in data sharing while simultaneously protecting the privacy and interests of patients and families, and return its benefits to them.

KEYWORDS:

Data sharing; ELSI; Genomic research; Human research protection; Patients and family members

PMID:
29914459
PMCID:
PMC6006763
DOI:
10.1186/s12910-018-0310-5
[Indexed for MEDLINE]
Free PMC Article

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