Use of next generation sequencing technologies in research and beyond: are participants with mental health disorders fully protected?
Use of next generation sequencing technologies in research and beyond: are participants with mental health disorders fully protected?
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DOI：
10.1186/1472-6939-13-36
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发表时间：
2012-12-20
影响因子：
2.7
通讯作者：
Godard, Beatrice
中科院分区：
文献类型：
--
作者：
Groisman, Iris Jaitovich;Mathieu, Ghislaine;Godard, Beatrice
背景：下一代测序（NGS）有望帮助发现与双相情感障碍（BD）相关的难以捉摸的致病遗传缺陷。本文确定了NGS的重要性，并进一步分析了这种方法在研究双相障碍以及其他精神疾病的研究项目中使用时的社会和伦理影响，以确保研究参与者的保护。方法：我们通过PubMed对相关研究进行了系统综述，然后人工检索原始文章的标题和摘要，包括近五年发表的综述、评论和信，涉及NGS技术和精神障碍（特别是双相障碍）基因组学研究引发的伦理和社会问题。共有217项研究有助于确定本文讨论的主题。结果：NGS产生的大量信息使双相障碍患者特别容易受到伤害，并且在整个同意过程中增加了对教育支持的需求，随后在向他们传达个人研究结果和偶然发现时，增加了对遗传咨询的需求。我们的结果强调了尊重参与者自主权的重要性和困难，同时避免任何治疗上的误解。我们还分析了对偶然发现的使用和交流制定具体规定的必要性，以及NGS在医疗保健领域日益增长的影响。结论：研究人员及其机构、研究伦理委员会以及参与者代表需要共同努力来制定一个量身定制的同意程序，以便更好地保护研究参与者。然而，参与双相障碍护理和治疗的卫生保健专业人员需要首先确定ngs产生的发现的科学有效性和临床实用性，然后确定其预防和治疗意义。
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.