How are genetic test results being used by Australian life insurers?

Abstract

In Australia, the USA and many Asian countries the life insurance industry is self-regulated. Individuals must disclose genetic test results known to them in applications for new or updated policies including cover for critical care, income protection and death. There is limited information regarding how underwriting decisions are made for policies with such disclosures. The Australian Financial Services Council (FSC) provided de-identified data collected on applications with genetic test result disclosure from its life insurance member companies 2010–2013 to enable repetition of an independent examination undertaken of applications 1999-2003: age; gender; genetic condition; testing result; decision-maker; and insurance cover. Data was classified as to test result alone or additional other factors relevant to risk and decision. Where necessary, the FSC facilitated clarification by insurers. 345/548 applications related to adult-onset conditions. The genetic test result solely influenced the decision in 165/345 applications: positive (n = 23), negative (n = 139) and pending (n = 3). Detailed analyses of the decisions in each of these result categories are presented with specific details of 11 test cases. Policies with standard decisions were provided for all negative test results with evidence of reassessment of previous non-standard decisions and 20/23 positive results with recognition of risk reduction strategies. Disclosure of positive results for breast/ovarian cancer, Lynch syndrome and hereditary spastic paraplegia, and three pending results, generated non-standard decisions. The examination demonstrates some progress in addressing concerns in regard to utilisation of genetic test information but the self-regulatory system in Australia only goes some way in meeting internationally recommended best practice.

Genetic discrimination by Australian insurance companies: a survey of consumer experiences

“…Accessing records of underwriting decisions by life insurers has been difficult, and controlled by the peak insurer body, the FSC. Data on underwriting has been periodically made available to researchers for analysis and resulting publication [8, 16]. However, published datasets have typically lacked completeness, with limited numbers of insurers contributing data, and have been significantly out-of-date by publication.…”

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

“…Strengths of the study include an experienced and diverse investigator group from across Australia that has published extensively together in the area [1,34,70,[73][74][75][76][77][78], and built upon previous research over two decades from some of the group members [8, 42, 46-48, 77, 79-84]. The project was made possible by an Australian government grant which was endorsed by the Victorian Department of Health & Human Services, Human Genetics Society of Australasia and over 20 other project partners, reflecting its widespread support and significance.…”

“…The FSC requires its member companies to record in a dedicated database de-identified information regarding all applications for a life insurance product where a genetic test result has been disclosed, either voluntarily or inadvertently [19]. Previous analyses have been conducted on data collected in this database [46,72]. The FSC, as a study partner, has made changes to the database fields to take into account the different data collection required following the commencement of the moratorium.…”

Comparative perspectives: regulating insurer use of genetic information

“…An academic noted, "There certainly are a few cases, but I don't think there is widespread systemic discrimination practiced." This belief is supported by independent empirical research [11,12]. This research results from an unintended benefit produced when insurers can access genetic information-by allowing access to genetic test results, Australia has accumulated a wealth of data regarding insurer use of genetic data.…”