Experts reflecting on the duty to recontact patients and research participants; why professionals should take the lead in developing guidelines

Colin Mitchell, Corrette Ploem, Valesca Retèl, Sjef Gevers, Raoul Hennekam

Research output: Contribution to journalArticleAcademicpeer-review


Sequencing technology is increasing the scale of information that could benefit patients who have been tested in the past. This raises the question whether professionals have a duty to recontact such patients or their families. There is currently no clear basis for a legal duty to recontact, and professional guidelines are limited. We conducted interviews with 14 senior professionals from the Netherlands and UK to obtain a range of opinions on what obligations are estimated to be possible or desirable. There was (near) consensus that a lack of resources currently inhibits recontacting in clinical practice, that recontacting is less desirable in research, that information on recontacting should be part of informed consent, and that a legal duty should follow professional standards. There was a diversity of opinions on the desirability of a more systematic approach, potential obligations in hybrid clinical-research projects, and who should bear responsibility for seeking updates. Based on the literature, legal framework and these interviews, we conclude that a general duty to recontact is unlikely, but that in specific circumstances a limited duty may apply if the benefit to the individual is significant and the burden on professionals not too extensive. The variation in opinion demonstrates that further deliberations are desirable. The development of guidelines—a process the European Society of Human Genetics has begun—is important to ensure that the courts, in deciding a recontacting case, can take into account what professionals consider responsible standards in this field.
Original languageEnglish
JournalEuropean Journal of Medical Genetics
Publication statusE-pub ahead of print - 20 Mar 2019
Externally publishedYes

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