A genetic researcher’s devil’s dilemma: Warn relatives about their genetic risk or respect confidentiality agreements with research participants?

Abstract Background With advances in sequencing technologies, increasing numbers of people are being informed about a genetic disease identified in their family. In current practice, probands (the first person in a family in whom a genetic predisposition is identified) are asked to inform at-risk re...

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Autores principales:	Lieke M. van den Heuvel, Els L. M. Maeckelberghe, M. Corrette Ploem, Imke Christiaans
Formato:	article
Lenguaje:	EN
Publicado:	BMC 2021
Materias:	Family communication research Genetic risk Duty to warn Informing at-risk relatives Medical philosophy. Medical ethics R723-726
Acceso en línea:	https://doaj.org/article/2204856fd7a4465db72fe6e4d2bdf288
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spelling	oai:doaj.org-article:2204856fd7a4465db72fe6e4d2bdf2882021-11-28T12:03:31ZA genetic researcher’s devil’s dilemma: Warn relatives about their genetic risk or respect confidentiality agreements with research participants?10.1186/s12910-021-00721-41472-6939https://doaj.org/article/2204856fd7a4465db72fe6e4d2bdf2882021-11-01T00:00:00Zhttps://doi.org/10.1186/s12910-021-00721-4https://doaj.org/toc/1472-6939Abstract Background With advances in sequencing technologies, increasing numbers of people are being informed about a genetic disease identified in their family. In current practice, probands (the first person in a family in whom a genetic predisposition is identified) are asked to inform at-risk relatives about the diagnosis. However, previous research has shown that relatives are sometimes not informed due to barriers such as family conflicts. Research on family communication in genetic diseases aims to explore the difficulties encountered in informing relatives and to identify ways to support probands in this. Main body Research on family communication may also reveal that participants did not inform their relatives about the risk of a serious genetic condition, even when preventive and treatment options are available. Researchers may then face a dilemma: Do they need to warn at-risk relatives about the finding? Or do they keep silent due to prior confidentiality agreements with study participants? Conclusions We believe that the absolute confidence promised to research participants outweighs the interests of their relatives, even though it can be claimed that relatives at risk of a genetic disease do, in principle, have a right to know information collected about their health. Not respecting confidentiality agreements could cause distrust between researchers and research participants and possibly harm the relationship between probands and relatives. Relatives' health interests can still be taken into account without jeopardizing participant trust, by considering alternative scenarios, including sharing general study findings on the barriers participants experience with their healthcare professionals and by offering participants psychosocial support for family communication.Lieke M. van den HeuvelEls L. M. MaeckelbergheM. Corrette PloemImke ChristiaansBMCarticleFamily communication researchGenetic riskDuty to warnInforming at-risk relativesMedical philosophy. Medical ethicsR723-726ENBMC Medical Ethics, Vol 22, Iss 1, Pp 1-7 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	Family communication research Genetic risk Duty to warn Informing at-risk relatives Medical philosophy. Medical ethics R723-726
spellingShingle	Family communication research Genetic risk Duty to warn Informing at-risk relatives Medical philosophy. Medical ethics R723-726 Lieke M. van den Heuvel Els L. M. Maeckelberghe M. Corrette Ploem Imke Christiaans A genetic researcher’s devil’s dilemma: Warn relatives about their genetic risk or respect confidentiality agreements with research participants?
description	Abstract Background With advances in sequencing technologies, increasing numbers of people are being informed about a genetic disease identified in their family. In current practice, probands (the first person in a family in whom a genetic predisposition is identified) are asked to inform at-risk relatives about the diagnosis. However, previous research has shown that relatives are sometimes not informed due to barriers such as family conflicts. Research on family communication in genetic diseases aims to explore the difficulties encountered in informing relatives and to identify ways to support probands in this. Main body Research on family communication may also reveal that participants did not inform their relatives about the risk of a serious genetic condition, even when preventive and treatment options are available. Researchers may then face a dilemma: Do they need to warn at-risk relatives about the finding? Or do they keep silent due to prior confidentiality agreements with study participants? Conclusions We believe that the absolute confidence promised to research participants outweighs the interests of their relatives, even though it can be claimed that relatives at risk of a genetic disease do, in principle, have a right to know information collected about their health. Not respecting confidentiality agreements could cause distrust between researchers and research participants and possibly harm the relationship between probands and relatives. Relatives' health interests can still be taken into account without jeopardizing participant trust, by considering alternative scenarios, including sharing general study findings on the barriers participants experience with their healthcare professionals and by offering participants psychosocial support for family communication.
format	article
author	Lieke M. van den Heuvel Els L. M. Maeckelberghe M. Corrette Ploem Imke Christiaans
author_facet	Lieke M. van den Heuvel Els L. M. Maeckelberghe M. Corrette Ploem Imke Christiaans
author_sort	Lieke M. van den Heuvel
title	A genetic researcher’s devil’s dilemma: Warn relatives about their genetic risk or respect confidentiality agreements with research participants?
title_short	A genetic researcher’s devil’s dilemma: Warn relatives about their genetic risk or respect confidentiality agreements with research participants?
title_full	A genetic researcher’s devil’s dilemma: Warn relatives about their genetic risk or respect confidentiality agreements with research participants?
title_fullStr	A genetic researcher’s devil’s dilemma: Warn relatives about their genetic risk or respect confidentiality agreements with research participants?
title_full_unstemmed	A genetic researcher’s devil’s dilemma: Warn relatives about their genetic risk or respect confidentiality agreements with research participants?
title_sort	genetic researcher’s devil’s dilemma: warn relatives about their genetic risk or respect confidentiality agreements with research participants?
publisher	BMC
publishDate	2021
url	https://doaj.org/article/2204856fd7a4465db72fe6e4d2bdf288
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A genetic researcher’s devil’s dilemma: Warn relatives about their genetic risk or respect confidentiality agreements with research participants?

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