In: Twin research and human genetics: the official journal of the International Society for Twin Studies (ISTS) and the Human Genetics Society of Australasia, S. 1-1
In: Twin research and human genetics: the official journal of the International Society for Twin Studies (ISTS) and the Human Genetics Society of Australasia, Band 26, Heft 2, S. 184-187
AbstractThe expansion of genetic and genomic testing in clinical practice and research, and the growing market for direct-to-consumer genomic testing has led to increased awareness about the impact of this form of testing on insurance. Genetic or genomic information can be requested by providers of mutually rated insurance products, who may then use it when setting premiums or determining eligibility for cover under a particular product. Australian insurers are subject to relevant legislation and an industry led standard that was updated in 2019 to introduce a moratorium on the use of genetic test results in life insurance underwriting for policies <AU$500K. The Human Genetics Society of Australasia has updated its position statement on genetic testing and life insurance to account for these changes and to increase the scope of the statement to include a wider range of personally-rated insurance products, such as life, critical care, and income protection products. Recommendations include that: providers of professional education involving genetics should include ethical, legal, and social aspects of insurance discrimination in their curricula; the Australian Government take a more active role in regulating use of genetic information in personal insurance; that information obtained in the course of a research project be excluded; insurers seek expert advice when making underwriting decisions regarding genetic testing; and engagement between the insurance industry, regulators, and the genetics profession be improved.
Background Melanoma is Australia's 4th most common cancer. Early detection is fundamental to maximizing health outcomes and minimizing treatment costs. Population based screening programs have not been justified in health economics studies. However, a screening approach targeting high risk individuals could improve the cost-benefit ratio. Methods and analysis We describe a two year longitudinal randomised controlled trial (RCT) targeted at high risk individuals. It will compare routine clinical care (control) with an intensive skin surveillance program (the intervention) consisting of novel three dimensional (3D) total body photography (TBP), sequential digital dermoscopy and melanoma risk stratification. The primary outcomes will evaluate clinical, economic and consumer impact of the intervention. Clinical outcomes will evaluate differences in the rate of lesion excisions/biopsies per person, benign to malignant ratio for excisions, and thickness of melanomas diagnosed. A health economic analysis using government data repositories will capture healthcare utilisation and costs relating to skin surveillance. Consumer questionnaires will examine intervention acceptability, the psychological impact, and attitudes towards melanoma risk and sun protective behaviour. Secondary outcomes include; the development of a holistic risk algorithm incorporating clinical, phenotypic and genetic factors to facilitate the identification of those most likely to benefit from this surveillance approach. In addition, the feasibility of integrating the intervention with teledermatology to enhance specialist care in remote locations will be evaluated. Conclusion This will be the first RCT to compare a targeted surveillance program utilising new 3D TBP technology against current routine clinical care for individuals at high risk of melanoma.