Genetic discrimination is one of the most pervasive challenges resulting from research and development in human genetics. To collaboratively study and prevent this ethical issue, we established an international Genetic Discrimination Observatory comprising a network of researchers and stakeholders from more than 19 jurisdictions.

Scientific and technological developments are propelling genetics and genetic technologies into the public sphere. Scientific and technological innovation is becoming more refined, resulting in an increase in the availability and use of genetic testing, and other cutting edge genetic technologies, including gene editing. These genetic advances not only signal a growing trend towards precision medicine, but also provoke consideration of the protection of genetic information as an emerging human rights concern. Particular ethical and legal issues arise from a disability perspective, including the potential for discrimination and privacy violations. In consideration of the intersection of genetics and disability, this article highlights the significant concerns raised as genetic science and technology advances, and the consequences for disability rights, particularly the core concepts of non-discrimination, and respect for diversity and difference. On examining international human rights perspectives, it looks particularly at the UN Convention on the Rights of Persons with Disabilities and how it may be used to guide best practice in this area. With an acknowledgement of historical abuses of genetic science, this article highlights the need to maintain caution as to the potential consequences of advancing genetic technologies on persons with disabilities and indeed on society as a whole.

Ground-breaking genetic discoveries and technological advances have opened up a new era in genetic exploration, and technological advances have enabled geneticists to successfully uncover the genetic basis of a wide range of diseases. Although currently of limited predictive value, genetic testing promises to potentially revolutionise health care and medical treatment. Among other things, genetic testing technology may offer the prospect of being able to detect the onset of future disabilities, including mental illness. In light of advances in genetic science and technology, questions arise as to whether an appropriate framework exists to protect the interests of individuals and also to acknowledge competing commercial considerations for the use of genetic testing, particularly in the employment context. Against the backdrop of rapidly advancing genetic technologies, this article considers whether it is necessary to regulate genetic testing of employees for mental illness. This article examines the regulation of genetic testing in this area from the perspective of the social model of disability and the UN Convention on the Rights of Persons with Disabilities. It makes recommendations for addressing the competing interests and argues for the need to regulate genetic testing for mental illnesses in employment, with individual rights at the forefront.

With developments in the field of genetics, new technologies such as genetic testing are fast emerging. Although offering unparalleled opportunities, these developments raise many ethical, legal and other issues. One challenge relates to the duty of confidentiality and disclosure obligations on doctors. Considering the familial nature of genetic information, doctors will increasingly have access to predictive health information, about individuals and individuals’ relatives. This article examines whether disclosure obligations on doctors should be expanded to encompass an obligation to disclose genetic risk to family members, and whether the exceptions to the duty of confidentiality should recognise genetic risk as potential harm. With recognition of the competing rights, the article considers the implications of recent case law in the United Kingdom, indicating a willingness to extend the duty of disclosure. This article argues that there is a case to be made for expanding disclosure obligations on doctors in certain circumstances. With developments in the field of genetics, new technologies such as genetic testing are fast emerging. Although offering unparalleled opportunities, these developments raise many ethical, legal and other issues. One challenge relates to the duty of confidentiality and disclosure obligations on doctors. Considering the familial nature of genetic information, doctors will increasingly have access to predictive health information, about individuals and individuals’ relatives. This article examines whether disclosure obligations on doctors should be expanded to encompass an obligation to disclose genetic risk to family members, and whether the exceptions to the duty of confidentiality should recognise genetic risk as potential harm. With recognition of the competing rights, the article considers the implications of recent case law in the United Kingdom, indicating a willingness to extend the duty of disclosure. This article argues that there is a case to be made for expanding disclosure obligations on doctors in certain circumstances.