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Genetic Testing And Health Insurance In Europe: Policy And Privacy Considerations – Predictive genetic testing provides individuals with information about their future risk of developing health conditions. Determining whether a genetic test can affect the insurance industry is complicated and must be evaluated on a per-test basis.
Predictive genetic testing provides individuals with information about their future risk of developing health conditions. Theoretically, predictive genetic testing could have positive or negative effects on the insurance industry. If genetic test results stimulate measures to reduce health risks, they could reduce costs for insurers. If disclosed to insurance companies, such information could enable them to better understand risks at the individual and population level and make insurance more affordable. But if individuals who know they have a high genetic risk of getting sick or dying are more likely to apply for insurance than those who are not at high risk, this could lead to an unexpected increase in claims. It could be exacerbated if people with low genetic risk are less likely to apply for insurance compared to the general population. If this happened on a large scale, it could make the insurance market unsustainable. Determining whether a genetic test can affect the insurance industry is complicated and must be evaluated on a per-test basis.
Genetic Testing And Health Insurance In Europe: Policy And Privacy Considerations
Contents
The Cambridge Center for Health Services Research, a collaboration between Europe and the University of Cambridge, developed a framework for evaluating potential impacts on the UK insurance industry as a result of
Community Concerns About Genetic Discrimination In Life Insurance Persist In Australia: A Survey Of Consumers Offered Genetic Testing
Genetic tests. It considers the characteristics of genetic tests and behavioral aspects that influence their uptake. It is intended to provide a transparent approach to evaluate whether a specific condition for which a test is available may affect the insurance industry, now or in the future, and understand the key factors influencing this.
The research described in this report was commissioned by the Association of British Insurers and carried out by Europe.
This report is part of the Corporation Research report series. reports present research results and objective analyzes that address the challenges facing the public and private sectors. All reports undergo rigorous peer review to ensure high standards of research quality and objectivity.
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The Corporation is a non-profit institution that helps improve policy and decision-making through research and analysis. its publications do not necessarily reflect the opinions of the research clients and sponsors.
Rodriguez-Rincon, Daniela, Sarah Parkinson, Lucy Hocking, Hamish Evans, Emma Hudson and Katherine I. Morley, Assessing the impact of developments in genetic testing on insurers’ risk exposure. Santa Monica, CA: Corporation, 2022. https:///pubs/research_reports/RRA1209-1.html.In Australia and New Zealand, unlike much of the developed world, insurance companies can use genetic test results to deny coverage or increase premiums for mutual rated insurance products, including life, income protection and disability insurance. Genetics professionals regularly discuss insurance implications with clients and report the issue as a clinical challenge, but no studies have examined clinical practice or opinions. This study surveyed genetic counselors and clinical geneticists from Australia and New Zealand to (i) examine variation in professional practice across the Australian clinical genetics workforce related to the insurance implications of genetic testing, and (ii) determine views regarding current regulation of the issue. There was considerable variation in training and clinical guidelines, particularly around communication of insurance implications. Almost half of the participants reported that they were not educated on the insurance implications of genetic testing, and almost 40% were unsure whether they could adequately counsel clients. A number of deficiencies in professional knowledge and understanding of the issue were identified. Widespread concerns were reported regarding regulation in this area, with < 10% of Australian participants rating current Australian regulations as adequate to protect clients from genetic discrimination. The findings of this study highlight the opportunity for greater education, consistency and professional training on the issue of genetics and insurance in Australasia, and strong agreement on the need for regulatory reform.
In Australia and New Zealand, insurers can use genetic test results to refuse cover, increase premiums or exclude aspects of cover for mutually assessed life insurance products, including life insurance, income protection and total disability insurance. Genetic test results cannot be used for health insurance in Australia, which is community classified (1), but can be used in New Zealand for this purpose.
Many countries, including Canada, the United Kingdom, and much of Europe, have banned or restricted the use of genetic information by life insurance companies (2, 3). In Australasia
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However, life insurance companies may require applicants to provide results of genetic testing known to the applicant. This includes genetic results from clinical testing as well as research and direct-to-consumer online genetic tests (4). Insurance companies can then use this information, along with other health and lifestyle information, when making insurance decisions.
The use of genetic test results by life insurance companies is particularly relevant for individuals unaffected by disease who undergo clinical predictive genetic testing (eg, for neurogenetic conditions, such as Huntington’s disease or cancer predisposition, such as Lynch syndrome). New research shows that certain vulnerable individuals are deterred from having predictive genetic testing (5, 6) and choose not to participate in genomic research (7) due to insurance fears.
Life insurers in Australia and New Zealand are currently self-regulated [administered by the peak industry body in each country, both called the Financial Services Council (FSC)], with no government oversight (8). It can be argued that this creates uncertainty for consumers and genetics professionals as to how insurers will use genetic information and raises a number of other concerns that have been discussed elsewhere (8). It is argued that the Australian FSC’s recent policy changes will only increase this uncertainty, as the new policy advises insurers to ask whether applicants are “considering” a genetic test. Given that the applicant at this stage does not have knowledge of genetic test information that the insurer does not, it appears that there is no information imbalance if the assessment of a genetic test is not disclosed to the insurer (8).
Clinical genetics professionals are in a unique position to inform clients of the insurance implications of genetic testing before testing takes place (9). Guidance from the Human Genetics Society of Australasia (HGSA), the representative body for human genetics professionals in Australia and New Zealand, indicates that genetics professionals should include a discussion of relevant insurance issues during consultations (10, 11). Two published Australian studies have shown that genetics professionals routinely discuss life insurance implications with clients during pre-test counseling sessions (12, 13). This takes time in sessions that cover a significant amount of information; However, to our knowledge, there are no Australian studies exploring professional practice in this area.
This study was designed to determine whether variations exist in workplace trends, training policies, and opinions related to the issue of genetic testing and insurance, and current regulation.
Genetics professionals were recruited through the HGSA via email to members of the Australasian Society of Genetic Counselors and the Australasian Association of Clinical Geneticists, the HGSA newsletter and the 2017 HGSA Annual Scientific Meeting. Although the focus of the project was on Australian practice, the HGSA includes Australian and New Zealand practitioners and all interested participants were encouraged to participate. A screening question was used to include only genetics professionals who see clients considering genetic testing.
The study used a web-based survey (Appendix 1 in Supplementary Material), which was developed and refined through consultation with statistical and subject matter experts, including genetic counsellors, geneticists and legal and ethical experts. The survey aimed to measure (1) presence and adequacy of training and guidelines held by genetics services regarding communication of insurance issues with clients; (2) knowledge and practice of genetics professionals; and (3) attitudes towards regulation of the area. The published literature was reviewed and relevant validated scales were assessed, but no scales were suitable for the topics of the survey.
The survey was open for data collection from 7 June 2017 to 18 August 2017. Data were collected and managed using the Research Electronic Data Capture (REDCap) electronic data capture tool hosted by the Murdoch Children’s Research Institute (14). Online survey data were de-identified and exported for analysis using STATA 14 (StataCorp, Texas). No calculations related to power or statistical significance were performed for this exploratory study. Qualitative data were collected from selected participants through telephone interviews, but these data are not reported in this article.
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This study was completed in partial fulfillment of the requirements for the Master of Genetic Counselling, University of Melbourne, Victoria, Australia, and was supported by the Victorian Government’s Infrastructure Operating Support Program. Approval for the project was granted by the Human Ethics Advisory Committee, Department of Paediatrics, University of Melbourne on 12 May 2017.
Eighty-seven genetics professionals participated in the online survey. The number of participants who have completed each question (n value) is reported. The demographics of the participants in the survey are indicated in table 1.
Forty-nine percent (n =
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