McWhirter and colleagues report the development and validation of 6 scenarios based on actual genomic data sharing pratices in Australia. These scenarios could be used to inform the decision-making of data access and research ethics committees by enhancing understanding of the downstream uses of genetic sequence information. Scenarios 1 - 6 are available in Table 3 of the linked publication.
This short (3 minute) English language video provides information on Alzheimer's disease, including its genetic component. This video underscores Alzheimer's disease as a complex and multi-determined condition; it clarifies that predictive genetic testing offers a probability of developing the disease, not a definite result. For a study that utilizes this video: Pavarini, G., Hamdi, L., Lorimer, J., & Singh, I. (2021).
PROJECT NARRATIVE The proposed K01 Award?'Evaluating the Risks and Benefits of the Next Generation of Direct-to-Consumer Genetic Tests??will enable the candidate to acquire the academic background, research experience, and professional skills to become an independent ELSI investigator exploring the risks and benefits of current and emerging direct-to-consumer (DTC) genetic tests.
Project Narrative This proposal seeks to investigate the ethical, social, and policy implications of a new kind of genetic information currently available to the public: polygenic scores for educational attainment (EA-PGS).
Project Narrative ?Ethical and Social Implications of In Vitro Gametogenesis? In vitro gametogenesis (IVG) is an emerging technology that involves making an egg or a sperm cell outside of the body from a skin cell or a progenitor germ cell, an approach recently validated in mouse models.
PROJECT NARRATIVE Human genome editing technologies are evolving rapidly and with this evolution brings questions regarding governance and the ethical implications involved in applying these technologies. The He Jiankui controversy is the primary example of the potential exploitation of HGE and the importance of self-governance. This project will be the first case-study to evaluate self-governance in the realm of human genome editing technologies, the findings of which will be validated through a survey of HGE scientists.
PROJECT NARRATIVE A number of US employers are offering their employees confidential workplace genomic testing (wGT), a service that could inform employees of their genetic risk for certain treatable diseases but may also raise concerns about genetic privacy and workplace discrimination.