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. 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. 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. (shrink)

Ongoing research on making “human-animal chimeras” or “animals containing human material” to solve the shortage of organs available for transplantation has raised many ethical issues regarding the creation and utilization of such constructs, including cultural views regarding the status of those creations. A pilot study was conducted to explore Japanese public attitudes toward human-animal chimeras or ACHM. The February 2012 study consisted of focus group interviews with citizens from the Greater Tokyo Area, aged between 20 and 54. The 24 participants (...) were divided into four groups. Transcripts of the interviews were analyzed and participants’ attitudes categorized. Five categories of participant attitudes were identified: resistance to the unnatural, concerns about animal welfare, concerns about controlling human-animal chimeras, concerns about the possible birth of intermediate entities, and resistance to creating and utilizing animals containing my material or my child’s material. Our FGI results showed a broader and greater variety of public concerns than those reported in previous studies. While researchers have tried to establish new methods to avoid creating intermediate entities, our participants expressed concerns about not only intermediate entities but also animals containing their own material or their child’s material. Based upon their responses in the interviews, we are introducing a new ethical concern: “animals containing my material/my child’s material.”. (shrink)