The need for attention to the ethical, legal, and social implications of advances in psychiatric genomics

Lázaro‐Muñoz, Gabriel; Lenk, Christian

doi:10.1002/ajmg.b.32768

Cited by 2 publications

(3 citation statements)

References 9 publications

(9 reference statements)

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“…An article by Rahimzadeh et al presents an ethical framework for data sharing in paediatric genomic research [91]. A special issue of the American Journal of Medical Genetics Part B: Neuropsychiatric Genetics presents articles on ethical issues in psychiatric genomics research [84]. There is not yet any literature on precisely the combination of the aspects (genetics and genomics, paediatric study population, neurodevelopmental and psychiatric disorders, international setting) that characterizes the research activities of MINDDS and similar research efforts.…”

Section: Sharing Of Research Resultsmentioning

confidence: 99%

“…Ethical issues known to be associated with genomic research in general, such as privacy risks and informed consent/assent, seem especially pressing for NDD participants because of potentially decreased cognitive abilities, increased vulnerability, and stigma associated with mental health problems. As Lázaro-Muñoz and Lenk point out, "many of the 'phenotypes' targeted by eugenics movements, including euthanasia and sterilization programs" were psychiatric and neurodevelopmental disorders [84].…”

Section: Discussionmentioning

confidence: 99%

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Ethical issues in genomics research on neurodevelopmental disorders: a critical interpretive review

et al. 2021

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Background Genomic research on neurodevelopmental disorders (NDDs), particularly involving minors, combines and amplifies existing research ethics issues for biomedical research. We performed a review of the literature on the ethical issues associated with genomic research involving children affected by NDDs as an aid to researchers to better anticipate and address ethical concerns. Results Qualitative thematic analysis of the included articles revealed themes in three main areas: research design and ethics review, inclusion of research participants, and communication of research results. Ethical issues known to be associated with genomic research in general, such as privacy risks and informed consent/assent, seem especially pressing for NDD participants because of their potentially decreased cognitive abilities, increased vulnerability, and stigma associated with mental health problems. Additionally, there are informational risks: learning genetic information about NDD may have psychological and social impact, not only for the research participant but also for family members. However, there are potential benefits associated with research participation, too: by enrolling in research, the participants may access genetic testing and thus increase their chances of receiving a (genetic) diagnosis for their neurodevelopmental symptoms, prognostic or predictive information about disease progression or the risk of concurrent future disorders. Based on the results of our review, we developed an ethics checklist for genomic research involving children affected by NDDs. Conclusions In setting up and designing genomic research efforts in NDD, researchers should partner with communities of persons with NDDs. Particular attention should be paid to preventing disproportional burdens of research participation of children with NDDs and their siblings, parents and other family members. Researchers should carefully tailor the information and informed consent procedures to avoid therapeutic and diagnostic misconception in NDD research. To better anticipate and address ethical issues in specific NDD studies, we suggest researchers to use the ethics checklist for genomic research involving children affected by NDDs presented in this paper.

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Section: Sharing Of Research Resultsmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Ethical issues in genomics research on neurodevelopmental disorders: a critical interpretive review

et al. 2021

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“…As Lázaro-Muñoz & Lenk pointed out, psychiatric and neurodevelopmental disorders were some of the phenotypes targeted by the eugenics movement. 10 Therefore, there is some trepidation among targeted communities on how genetic samples collected may be used in the future. As a result, one of the largest genetic studies, the Spectrum 10 K autism project, has had to be paused for further consultation.…”

Section: Ethical Issuesmentioning

confidence: 99%

Pharmacogenomics: an opportunity for personalised psychotropic prescribing in adults with intellectual disabilities

Perera

Steward²,

Courtenay

et al. 2022

BJPsych open

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Summary There is growing evidence for the use of pharmacogenomics in psychotropic prescribing. People with intellectual disabilities are disproportionately prescribed psychotropics and are at risk of polypharmacy. There is an urgent need for safeguards to prevent psychotropic overprescribing but it is equally crucial that this population is not left behind in such exciting initiatives. Understanding how genetic variations affect medications is a step towards personalised medicine. This may improve personalised prescribing for people with intellectual disabilities, especially given the high rate of psychiatric and behavioural problems in this population. Our editorial explores opportunities and challenges that pharmacogenomics offers for the challenges of polypharmacy and overprescribing of psychotropics in people with intellectual disabilities.

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The need for attention to the ethical, legal, and social implications of advances in psychiatric genomics

Cited by 2 publications

References 9 publications

Ethical issues in genomics research on neurodevelopmental disorders: a critical interpretive review

Ethical issues in genomics research on neurodevelopmental disorders: a critical interpretive review

Pharmacogenomics: an opportunity for personalised psychotropic prescribing in adults with intellectual disabilities

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