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Open Access Research article

Use of next generation sequencing technologies in research and beyond: are participants with mental health disorders fully protected?

Iris Jaitovich Groisman, Ghislaine Mathieu and Beatrice Godard*

Author Affiliations

Groupe de recherche Omics-Ethics, Programmes de bioéthique, Faculté de médecine, Université de Montréal, C.P. 6128, succ. Centre-ville, Montreal, H3C 3J7, Canada

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BMC Medical Ethics 2012, 13:36  doi:10.1186/1472-6939-13-36

Published: 20 December 2012

Abstract

Background

Next Generation Sequencing (NGS) is expected to help find the elusive, causative genetic defects associated with Bipolar Disorder (BD). This article identifies the importance of NGS and further analyses the social and ethical implications of this approach when used in research projects studying BD, as well as other psychiatric ailments, with a view to ensuring the protection of research participants.

Methods

We performed a systematic review of studies through PubMed, followed by a manual search through the titles and abstracts of original articles, including the reviews, commentaries and letters published in the last five years and dealing with the ethical and social issues raised by NGS technologies and genomics studies of mental disorders, especially BD. A total of 217 studies contributed to identify the themes discussed herein.

Results

The amount of information generated by NGS renders individuals suffering from BD particularly vulnerable, and increases the need for educational support throughout the consent process, and, subsequently, of genetic counselling, when communicating individual research results and incidental findings to them. Our results highlight the importance and difficulty of respecting participants’ autonomy while avoiding any therapeutic misconception. We also analysed the need for specific regulations on the use and communication of incidental findings, as well as the increasing influence of NGS in health care.

Conclusions

Shared efforts on the part of researchers and their institutions, Research Ethics Boards as well as participants’ representatives are needed to delineate a tailored consent process so as to better protect research participants. However, health care professionals involved in BD care and treatment need to first determine the scientific validity and clinical utility of NGS-generated findings, and thereafter their prevention and treatment significance.

Keywords:
Bipolar disorder; Next generation sequencing; Consent form; Return of results; Incidental findings; Genetic counselling; Participants’ protection