scholarly journals Human Genetics Society of Australasia Position Statement: Genetic Testing and Personal Insurance Products in Australia

2018 ◽  
Vol 21 (6) ◽  
pp. 533-537 ◽  
Author(s):  
Ainsley J. Newson ◽  
Sam Ayres ◽  
Jackie Boyle ◽  
Michael T. Gabbett ◽  
Amy Nisselle
Keyword(s):  
Genetic Testing ◽  
Professional Education ◽  
Human Genetics ◽  
Insurance Industry ◽  
Active Role ◽  
Position Statement ◽  
Personal Genome ◽  
Genetic Test Results ◽  
The Impact ◽  
Personal Insurance

The expansion of genetic and genomic testing in clinical practice and research and the growing market for at home personal genome 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 standard that was updated in late 2016. In 2018, the Human Genetics Society of Australasia 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 scope of insurance products that are not rated according to community risk, 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; that the Australian government take a more active role in regulating use of genetic information in personal insurance, including enacting a moratorium on use of genetic test results; that information obtained in the course of a research project be excluded; and that there is improved engagement between the insurance industry, regulators, and the genetics profession.

The Regulation of Genetic Testing and the Protection of Genetic and Medical Information in Singapore

2011 ◽  
pp. 199-219
Author(s):  
Terry Kaan
Keyword(s):  
Genetic Testing ◽  
Biomedical Research ◽  
Medical Information ◽  
Social Issues ◽  
Personal Information ◽  
Insurance Industry ◽  
Special Treatment ◽  
Privacy Concerns ◽  
Genetic Exceptionalism ◽  
The Impact

In the decades since its independence in 1965, the transformation of Singapore’s economy and its transition to a relatively developed economy has also in like manner transformed its health care system, and of the demands made of it. The emergence and availability of new medical technologies has put into sharp focus many novel legal, ethical as well as social issues. This chapter looks at how Singapore has attempted to respond to issues thrown up by genetic testing and screening technologies. A particular focus of this chapter will be the tension between privacy concerns, and the imperatives of access for biomedical research, given that biomedical research has been championed by the Singapore government as one of the future leading sectors of the economy of Singapore. This chapter also examines Singapore’s approach to the question of “genetic exceptionalism:” Does genetic information possess special qualities or attributes that remove it from the realm of ordinary personal information, and which thereby demands special treatment and protection? In this context, the impact of the doctrine of genetic exceptionalism on industry (in this case the insurance industry) is examined.

Disability Income Insurance: The Private Market and the Impact of Genetic Testing

2007 ◽  
Vol 35 (S2) ◽  
pp. 40-46 ◽  
Author(s):  
David J. Christianson
Keyword(s):  
Genetic Testing ◽  
Insurance Industry ◽  
Private Insurance ◽  
Disability Insurance ◽  
Insurance Market ◽  
Income Insurance ◽  
Potential Impact ◽  
Disability Income ◽  
The Individual ◽  
The Impact

This article discusses the disability insurance industry in order to provide context regarding the potential impact of genetic testing on disability insurance. It describes disability income insurance, exploring both the protection it offers and its main contract provisions. It goes on to describe the private insurance market and the differences between group and individual insurance, and concludes with implications of genetic testing with respect to the private disability insurance market. The individual disability income insurance market is theoretically of great interest as a matter of public policy since there is potential for unfair discrimination through genetic testing although this remains very unlikely as a matter of practice, however.It is more likely that a person will become disabled than die before age 65. The loss of income during a disability can be quite devastating. In contrast to the high risk and high impact of disability are the realities of the disability market.

scholarly journals Genetic Testing for Inherited Cardiovascular Diseases: A Scientific Statement From the American Heart Association

2020 ◽  
Vol 13 (4) ◽  
Author(s):  
Kiran Musunuru ◽  
Ray E. Hershberger ◽  
Sharlene M. Day ◽  
N. Jennifer Klinedinst ◽  
Andrew P. Landstrom ◽  
...  
Keyword(s):  
Genetic Testing ◽  
Cardiovascular Diseases ◽  
Best Practices ◽  
Human Genetics ◽  
American Heart ◽  
Heart Association ◽  
Test Results ◽  
Lipid Disorders ◽  
Genetic Test Results ◽  
Scientific Statement

Advances in human genetics are improving the understanding of a variety of inherited cardiovascular diseases, including cardiomyopathies, arrhythmic disorders, vascular disorders, and lipid disorders such as familial hypercholesterolemia. However, not all cardiovascular practitioners are fully aware of the utility and potential pitfalls of incorporating genetic test results into the care of patients and their families. This statement summarizes current best practices with respect to genetic testing and its implications for the management of inherited cardiovascular diseases.

The Regulation of Genetic Testing and the Protection of Genetic and Medical Information in Singapore

2011 ◽  
pp. 1853-1873
Author(s):  
Terry Kaan
Keyword(s):  
Genetic Testing ◽  
Biomedical Research ◽  
Medical Information ◽  
Social Issues ◽  
Personal Information ◽  
Insurance Industry ◽  
Special Treatment ◽  
Privacy Concerns ◽  
Genetic Exceptionalism ◽  
The Impact

In the decades since its independence in 1965, the transformation of Singapore’s economy and its transition to a relatively developed economy has also in like manner transformed its health care system, and of the demands made of it. The emergence and availability of new medical technologies has put into sharp focus many novel legal, ethical as well as social issues. This chapter looks at how Singapore has attempted to respond to issues thrown up by genetic testing and screening technologies. A particular focus of this chapter will be the tension between privacy concerns, and the imperatives of access for biomedical research, given that biomedical research has been championed by the Singapore government as one of the future leading sectors of the economy of Singapore. This chapter also examines Singapore’s approach to the question of “genetic exceptionalism:” Does genetic information possess special qualities or attributes that remove it from the realm of ordinary personal information, and which thereby demands special treatment and protection? In this context, the impact of the doctrine of genetic exceptionalism on industry (in this case the insurance industry) is examined.

scholarly journals Study protocol: the Australian genetics and life insurance moratorium—monitoring the effectiveness and response (A-GLIMMER) project

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Jane Tiller ◽  
Aideen McInerney-Leo ◽  
Andrea Belcher ◽  
Tiffany Boughtwood ◽  
Penny Gleeson ◽  
...  
Keyword(s):  
Life Insurance ◽  
Financial Services ◽  
Genetic Test ◽  
Insurance Industry ◽  
Genetic Research ◽  
Evaluation Framework ◽  
Test Results ◽  
Financial Industry ◽  
Genetic Test Results ◽  
The Impact

Abstract Background The use of genetic test results in risk-rated insurance is a significant concern internationally, with many countries banning or restricting the use of genetic test results in underwriting. In Australia, life insurers’ use of genetic test results is legal and self-regulated by the insurance industry (Financial Services Council (FSC)). In 2018, an Australian Parliamentary Inquiry recommended that insurers’ use of genetic test results in underwriting should be prohibited. In 2019, the FSC introduced an industry self-regulated moratorium on the use of genetic test results. In the absence of government oversight, it is critical that the impact, effectiveness and appropriateness of the moratorium is monitored. Here we describe the protocol of our government-funded research project, which will serve that critical function between 2020 and 2023. Methods A realist evaluation framework was developed for the project, using a context-mechanism-outcome (CMO) approach, to systematically assess the impact of the moratorium for a range of stakeholders. Outcomes which need to be achieved for the moratorium to accomplish its intended aims were identified, and specific data collection measures methods were developed to gather the evidence from relevant stakeholder groups (consumers, health professionals, financial industry and genetic research community) to determine if aims are achieved. Results from each arm of the study will be analysed and published in peer-reviewed journals as they become available. Discussion The A-GLIMMER project will provide essential monitoring of the impact and effectiveness of the self-regulated insurance moratorium. On completion of the study (3 years) a Stakeholder Report will be compiled. The Stakeholder Report will synthesise the evidence gathered in each arm of the study and use the CMO framework to evaluate the extent to which each of the outcomes have been achieved, and make evidence-based recommendations to the Australian federal government, life insurance industry and other stakeholders.

scholarly journals Human Genetics Society of Australasia Position Statement: Predictive and Presymptomatic Genetic Testing in Adults and Children

2020 ◽  
Vol 23 (3) ◽  
pp. 184-189
Author(s):  
Danya F. Vears ◽  
Samantha Ayres ◽  
Jackie Boyle ◽  
Julia Mansour ◽  
Ainsley J. Newson
Keyword(s):  
Genetic Counseling ◽  
Genetic Testing ◽  
Young People ◽  
Human Genetics ◽  
Predictive Testing ◽  
Position Statement ◽  
Informed Decision ◽  
Children And Young People ◽  
Adults And Children ◽  
Presymptomatic Genetic Testing

AbstractIn 2020, the Human Genetics Society of Australasia released its Position Statement on Predictive and Presymptomatic Genetic Testing in Adults and Children. This Position Statement synthesizes the major practical, psychosocial and ethical considerations associated with presymptomatic and predictive genetic testing in adults who have the capacity to make a decision, children and young people who lack capacity and adults living with reduced or fluctuating capacity. Recommendations include that predictive testing in adults, young people and children should only be offered with pretest genetic counseling and the option of posttest genetic counseling. An individual considering (for themselves or on behalf of another) whether to have a predictive test should also be supported to allow them to make an autonomous and informed decision. Predictive testing should only be offered to children and young people for conditions where there is likely to be a direct medical benefit to them through surveillance, use of prevention strategies or other medical interventions in the immediate future. Where symptoms are likely to develop in childhood, in the absence of options to implement surveillance or risk reduction measures, genetic health professionals and parents/guardians should discuss whether undertaking predictive testing is the best course of action for the child and the family as a whole. Where symptoms are likely to develop in adulthood, the default position should be to postpone predictive testing until the young person achieves the capacity to make their own autonomous and informed decision.

scholarly journals Recent developments in genetics and medically-assisted reproduction: from research to clinical applications†‡

2017 ◽  
Vol 2017 (3) ◽  
Author(s):  
J C Harper ◽  
K Aittomäki ◽  
P Borry ◽  
M C Cornel ◽  
G de Wert ◽  
...  
Keyword(s):  
Genetic Testing ◽  
Assisted Reproduction ◽  
European Society ◽  
Human Genetics ◽  
Massively Parallel Sequencing ◽  
Epigenetic Inheritance ◽  
Human Reproduction ◽  
Preimplantation Genetic Testing ◽  
Professional Societies ◽  
The Impact

Abstract Two leading European professional societies, the European Society of Human Genetics and the European Society for Human Reproduction and Embryology, have worked together since 2004 to evaluate the impact of fast research advances at the interface of assisted reproduction and genetics, including their application into clinical practice. In September 2016, the expert panel met for the third time. The topics discussed highlighted important issues covering the impacts of expanded carrier screening, direct-to-consumer genetic testing, voiding of the presumed anonymity of gamete donors by advanced genetic testing, advances in the research of genetic causes underlying male and female infertility, utilisation of massively-parallel sequencing in preimplantation genetic testing and non-invasive prenatal screening, mitochondrial replacement in human oocytes, and additionally, issues related to cross-generational epigenetic inheritance following IVF and germline genome editing. The resulting paper represents a consensus of both professional societies involved.

scholarly journals An Electronic Strategy for Eliminating Unnecessary Duplicate Genetic Testing

2019 ◽  
Author(s):  
Jacquelyn D Riley ◽  
Glenn Stanley ◽  
Robert Wyllie ◽  
Holly L Burt ◽  
Sandra B Horwitz ◽  
...  
Keyword(s):  
Health Care ◽  
Genetic Testing ◽  
Molecular Genetic ◽  
Cost Savings ◽  
Clinical Decision ◽  
Genetic Tests ◽  
Genetic Test Results ◽  
Electronic Interventions ◽  
The Impact ◽  
Electronic Intervention

Abstract Objectives To determine the impact of an electronic intervention designed to block duplicate constitutional genetic tests. Methods We constructed, implemented, and studied an electronic intervention that stopped duplicate genetic tests. The activation frequency, types of tests affected, and cost savings achieved with this intervention were determined. The frequency and justification of override requests were also studied. Results This intervention stopped 710 unnecessary duplicate genetic tests over a 3-year period and saved $98,596. The tests with the highest numbers of alerts were those used for screening presurgical or transplant patients and were commonly part of an order set or test panel. Most override requests were justified because of the lack of exclusion codes in the initial programming. Conclusions Electronic interventions that stop duplicate genetic testing, if properly constructed, can reduce waste, save health care dollars, and facilitate patient care by directing the provider to a test that has already been performed. 1.Duplicate molecular genetic testing, although generally unnecessary, occurs due to challenges in locating previous results. 2.Clinical decision support at order entry alerts providers to previous genetic test results and restricts repeat orders. 3.This Once-in-a-Lifetime electronic intervention supports a value-based health care model by reducing unnecessary genetic testing and associated costs.

Acquisition and disclosure of genetic information under alternative policy regimes: an economic analysis

2006 ◽  
Vol 1 (3) ◽  
pp. 263-276 ◽  
Author(s):  
Deborah Wilson
Keyword(s):  
Private Information ◽  
Genetic Information ◽  
Insurance Industry ◽  
Policy Issue ◽  
Theoretical Framework ◽  
Policy Implications ◽  
Test Results ◽  
Public Health Perspective ◽  
Genetic Test Results ◽  
The Impact

A current policy issue is whether, and if so under what circumstances, insurance companies should be given access to genetic test results. The insurance industry argues for mandatory disclosure in order to avoid problems of adverse selection; an alternative would be a moratorium or legislation preventing such disclosure; a third option a voluntary disclosure law. This paper investigates the impact of these policies on individuals' incentives to both acquire genetic information and to disclose it to providers of health and/or life insurance. The theoretical framework used to inform this analysis is provided by the ‘games of persuasion’ literature, in which one agent tries to influence another agent's decision by selectively withholding her private information regarding quality. The application of the theoretical framework to this policy context yields the following results. Individuals have the incentive to acquire genetic information and to disclose the test results if disclosure is voluntary. If, however, they are obliged to disclose the results of any genetic tests they have taken, their incentive may be not to acquire such information. I discuss the policy implications of these findings both from the point of view of the insurance industry and from a public health perspective.

scholarly journals A Systematic Review on the Impact of Genetic Testing for Familial Melanoma II: Psychosocial Outcomes and Attitudes

Dermatology ◽  
2021 ◽  
pp. 1-11
Author(s):  
Clare A. Primiero ◽  
Tatiane Yanes ◽  
Anna Finnane ◽  
H. Peter Soyer ◽  
Aideen M. McInerney-Leo
Keyword(s):  
Genetic Testing ◽  
Perceived Risk ◽  
Psychosocial Outcomes ◽  
Genetic Mutation ◽  
Cochrane Library ◽  
Cognitive Responses ◽  
Clinical Implementation ◽  
Familial Melanoma ◽  
Genetic Test Results ◽  
The Impact

<b><i>Background:</i></b> Although genetic testing for known familial melanoma genes is commercially available, clinical implementation has been restrained as utility is unclear, concerns of causing psychological distress are often cited, and consumer interest and perceptions are not well understood. A review of studies exploring participant-reported psychosocial outcomes and attitudes towards genetic testing for familial melanoma will provide insight into common emotional and cognitive responses. <b><i>Methods:</i></b> Database searches of PubMed, Embase, CINAHL, PsycINFO and the Cochrane Library were conducted using a date range of January 1995 to June 2020. Studies examining any psychosocial outcomes alongside genetic testing (real or hypothetical), in participants described as having a high risk of melanoma, were eligible. A narrative synthesis of results was used to describe psychosocial outcomes and summarise participant beliefs and attitudes towards genetic testing. <b><i>Results:</i></b> Limited evidence of adverse psychosocial outcomes was found. No impacts on perceived risk or control were reported, and minimal decisional regret was recorded. Generalised distress was comparable between both genetic mutation carriers and non-carriers, often decreasing over time from pretesting levels. Melanoma-specific distress was frequently higher in carriers than non-carriers; however, this difference was present prior to testing and often associated with personal melanoma history. Overall, participants’ attitudes towards testing were largely positive, with benefits more frequently described than limitations, and support for testing minors was strong. <b><i>Conclusions:</i></b> This review has found evidence of few adverse psychological outcomes following genetic testing. There was no indication of increased distress after genetic test results had been disclosed. If these findings were replicated in additional, larger, diverse populations over a longer follow-up period, this would be compelling evidence to guide clinical recommendations.

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