Governing healthcare records of past medical injustice beyond consent-based research ethics: a cross-sectional survey of public attitudes toward purpose, proximity, and stewardship in Japan
4 affiliations
- 1Department of Public Policy, Institute of Medical Science, The University of Tokyo, 4-6-1 Shirokane-dai, Minato-ku, Tokyo, 108-8639 Japan
- 2Graduate School of Core Ethics and Frontier Sciences, Ritsumeikan University, 56-1 Toji-in Kitamachi, Kita-ku, Kyoto, 603-8577 Japan
- 3Kyushu University Archives, Kyushu University, 6-10-1 Hakozaki, Higashi-ku, Fukuoka, 812-8581 Japan
- 4College of Social Sciences, Ritsumeikan University, 56-1 Toji-in Kitamachi, Kita-ku, Kyoto, 603-8577 Japan
Abstract
Background: How can sensitive health information be governed when consent cannot provide the basis for its legitimate use? This question is acute for healthcare records created in contexts of historical injustice — such as forced sterilization and the segregation of stigmatized groups. Such records are indispensable for accountability and redress yet capable of inflicting renewed harm, while the people whose lives they document may be deceased, unreachable, or never have had a meaningful opportunity to consent. In Japan, the Supreme Court’s July 2024 ruling that the former Eugenic Protection Law was unconstitutional has sharpened these questions; however, public views on the conditions of legitimate preservation and use remain largely undocumented.
Methods: We conducted a cross-sectional online panel survey in Japan in November 2024 (n = 1,143), using quotas for sex, age group, and prefecture among adults aged 20–69. Respondents reported their attitudes toward preservation and preferred custodians; the acceptability of six purposes of research use under three personal-proximity conditions (no personal information; self or living family members; ancestors); and their perceptions of benefits and risks. Variation by proximity and purpose constituted the primary comparison; demographic comparisons were exploratory and were summarized using Cramér’s V.
Results: Most respondents (86.8%) supported preservation, but support was conditional, with opposition centered on uncertainty about future purposes and privacy; acceptance of research use varied by purpose and proximity. Medical research was the most widely accepted purpose (77.4% in the no-personal-information condition); humanities and social science research, citizen-led inquiry, and journalistic investigations were less widely accepted. Acceptance was lowest for records concerning respondents themselves or their living family members. Originating medical or welfare institutions received the strongest support as custodians. Women expressed greater concern about psychological risks, particularly the possibility of recalling painful past experiences (Cramér’s V = 0.13).
Conclusions: Sensitive historical healthcare records can be governed neither by preservation imperatives alone nor by consent-based research ethics; their legitimate governance requires purpose-sensitive justification, relational privacy safeguards, and accountable stewardship. Public attitudes do not settle these normative questions but map the social conditions under which governance is likely to command legitimacy, indicating where explanation and trust-building are needed. They form one component of ethical legitimacy, complementing rather than replacing the moral perspectives of survivors, affected families, and disability communities.
Supplementary Information: The online version contains supplementary material available at https://doi.org/10.1186/s12910-026-01571-8.
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BibTeX
@article{watanabe2026governing,
title = {{Governing healthcare records of past medical injustice beyond consent-based research ethics: a cross-sectional survey of public attitudes toward purpose, proximity, and stewardship in Japan}},
author = {Saori Watanabe and Motoyuki Goto and Tomonori Akashi and Yuki Suzuki and Yoko Matsubara},
journal = {BMC Medical Ethics},
year = {2026},
month = aug,
doi = {10.1186/s12910-026-01571-8},
url = {https://doi.org/10.1186/s12910-026-01571-8},
note = {CC BY 4.0},
}
RIS
TY - JOUR
TI - Governing healthcare records of past medical injustice beyond consent-based research ethics: a cross-sectional survey of public attitudes toward purpose, proximity, and stewardship in Japan
AU - Saori Watanabe
AU - Motoyuki Goto
AU - Tomonori Akashi
AU - Yuki Suzuki
AU - Yoko Matsubara
PY - 2026
DA - 2026/08/12
JO - BMC Medical Ethics
DO - 10.1186/s12910-026-01571-8
UR - https://doi.org/10.1186/s12910-026-01571-8
AB - Background: How can sensitive health information be governed when consent cannot provide the basis for its legitimate use? This question is acute for healthcare records created in contexts of historical injustice — such as forced sterilization and the segregation of stigmatized groups. Such records are indispensable for accountability and redress yet capable of inflicting renewed harm, while the people whose lives they document may be deceased, unreachable, or never have had a meaningful opportunity to consent. In Japan, the Supreme Court’s July 2024 ruling that the former Eugenic Protection Law was unconstitutional has sharpened these questions; however, public views on the conditions of legitimate preservation and use remain largely undocumented. Methods: We conducted a cross-sectional online panel survey in Japan in November 2024 (n = 1,143), using quotas for sex, age group, and prefecture among adults aged 20–69. Respondents reported their attitudes toward preservation and preferred custodians; the acceptability of six purposes of research use under three personal-proximity conditions (no personal information; self or living family members; ancestors); and their perceptions of benefits and risks. Variation by proximity and purpose constituted the primary comparison; demographic comparisons were exploratory and were summarized using Cramér’s V. Results: Most respondents (86.8%) supported preservation, but support was conditional, with opposition centered on uncertainty about future purposes and privacy; acceptance of research use varied by purpose and proximity. Medical research was the most widely accepted purpose (77.4% in the no-personal-information condition); humanities and social science research, citizen-led inquiry, and journalistic investigations were less widely accepted. Acceptance was lowest for records concerning respondents themselves or their living family members. Originating medical or welfare institutions received the strongest support as custodians. Women expressed greater concern about psychological risks, particularly the possibility of recalling painful past experiences (Cramér’s V = 0.13). Conclusions: Sensitive historical healthcare records can be governed neither by preservation imperatives alone nor by consent-based research ethics; their legitimate governance requires purpose-sensitive justification, relational privacy safeguards, and accountable stewardship. Public attitudes do not settle these normative questions but map the social conditions under which governance is likely to command legitimacy, indicating where explanation and trust-building are needed. They form one component of ethical legitimacy, complementing rather than replacing the moral perspectives of survivors, affected families, and disability communities. Supplementary Information: The online version contains supplementary material available at https://doi.org/10.1186/s12910-026-01571-8.
SN - 1472-6939
ER -