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Research on genetic Databases: Duties of Rescue and equal Respect to all
Ignacio Mastroleo,
Felicitas Holzer,
Roland Mertelsmann
Affiliation: National Scientific and Technical Research Council (CONICET), BioThera Research Institute for the Philosophy of Translational Medicine, FLACSO collaborating centre of PAHO/WHO, Buenos Aires, Argentina
Keywords: secondary research, next generation sequencing, duty to rescue, equal respect
Categories: Life Sciences
DOI: 10.17160/josha.7.2.650
Languages: English
The ideal exercise of Castellanos et al. asks IRB members to accept or deny a researchers’ request for disclosing genes associated with breast-ovarian cancer, a potential clinically significant finding (CSF), to a subgroup of 1500 research participants of a research database of 300,000 subjects. Here, we defend that researchers are under a rational duty to rescue. However, we also argue that only a decision that equally respects the rights and interests of all participants could be a fair and reasonable decision, compatible with ethics and the rule of law. Consequently, IRB members should not only accept the researchers’ request to disclose potential CFS to database participants with breast-ovarian cancer genes but also to advocate for an update in the disclosure policy for all participants of the genetic research database.