Project On Sbi Life Insurance Pdf Download
Rolan Sacco
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.
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.
In Australia, risk-rated insurance is provided by life insurers, not health insurers. Under the Disability Discrimination Act 1992 (Cth), life insurers are legally permitted to use genetic test results to discriminate against all applicants [1]. Use of genetic test results in life insurance underwriting is self-regulated by the insurance industry, through mandatory Standards published by the Financial Services Council (FSC), the peak body that represents the majority of life insurers in Australia. Recent Australian research highlights ongoing issues with GD in life insurance, including lack of adherence to legal requirements and industry self-regulated policies [7, 8, 17, 18].
Our research project will assess whether the moratorium is effective in achieving these aims. This research will serve a critical role in increasing the evidence base internationally and helping Australia achieve appropriate long-term regulation for this important issue, taking into consideration the perspective of all key stakeholders [21].
We have identified four major stakeholder groups, whose perspectives must be considered in order to rigorously assess whether the current Australian moratorium is an appropriate and effective long-term regulatory solution. Some research has previously been conducted internationally on these stakeholder groups to gauge experiences and perceptions of genetic discrimination, views on regulation of genetic discrimination and knowledge of relevant local non-discrimination instruments, as set out below. While these studies represent findings at various timepoints across a variety of regulatory contexts, which may differ from those currently in Australia, they demonstrate the research which has been conducted in this area.
Since the 1990s, numerous studies in North America, the United Kingdom, Europe and Australia have described concerns regarding GD. These concerns were voiced by at-risk clinical patients [29,30,31,32,33,34,35,36,37,38,39], support groups [40], and the general public [41]. Some consumers reported feeling coerced into having genetic testing to make themselves eligible for insurance or reduce premiums [42]. Several studies reported difficulty in obtaining health and/or life insurance experienced by unaffected relatives of individuals with genetic conditions [43,44,45], healthy adults who had tested negative for a familial pathogenic variant [44, 45], and asymptomatic individuals with a pathogenic variant who had mitigated their risk through treatment interventions and/or surveillance [27, 32, 45,46,47,48,49,50]. Although more recent legislative and other changes mean that some of the circumstances allowing these instances of GD no longer exist, these studies demonstrate the impact GD has had on consumers over a long period of time, making them a critical stakeholder group for continued research.
It is critical that the impact, effectiveness and appropriateness of the FSC moratorium is monitored, taking into account these different stakeholder perspectives (consumers, healthcare providers, researchers and the financial services industry), to ensure that the proposed FSC review in 2022 is informed by rigorous and evidence-based submissions. Currently, there are no other mechanisms in place to do this, and this project addresses that critical gap. Our project, funded by an Australian government grant, will utilise a nationally coordinated effort to collect data from different stakeholder perspectives, to build a complete picture of the impact of the moratorium.
Widespread and accurate awareness of the existence of the moratorium and its terms among consumer groups, health professionals, genetic researchers and research participants, ethics committees, financial industry members and regulators.
Timely and regular updates to policy, practice and processes in health care, industry and research to reflect the moratorium (e.g. industry practices, policy and processes, consent forms for genetic testing, policy and practice in genetics services and human research ethics committee (HREC) guidelines).
As indicated in Table 1, a mixed methods design using both qualitative and quantitative data collection from a range of stakeholders will be used, incorporating pre- and post-moratorium comparisons where possible. No single methodological approach is capable of capturing all the data needed to evaluate the impact of this moratorium. Historically, data collection in the area of GD has proven challenging. Therefore, baseline or pre-moratorium data is incomplete and of varying quality. Where possible, relevant pre-existing research will be used to guide our methods and pre-existing measures will be used where possible to determine if the moratorium goals have been achieved. Figure 3 sets out a summary of the pre-moratorium research which has previously been conducted across the different stakeholder groups, and the research which will be conducted through the A-GLIMMER project.
In order to assess the outcome measures in Table 1, a number of objectives have been developed and a methodological approach to collect data to measure these objectives will be outlined for each stakeholder group. In part 1, we describe the research that will take place with consumers, in part 2, the research with health care professionals, in part 3, the approach we will take with researchers, and in part 4, our research program for working with the financial industry. In addition to the data collected through these mechanisms, the research team will seek out complementary data from other sources such as complaints to the Australian Financial Complaints Authority and the Australian Human Rights Commission, to enrich the data where possible.
When considering genetic testing, a consumer is any individual who has had, or may have in the future, a genetic test. Consumers include those with a personal and family history of genetic or medical conditions, as well as ostensibly healthy individuals who may consider genetic testing for potential preventative health benefit or may be offered population genetic testing or genetic testing as part of a research study. With respect to genetic testing and life insurance, individuals fall into a range of different categories (see Fig. 4).
Prior to finalising the protocol, a meeting of consumer representatives (from disease support groups and the general community) was held to seek input regarding the proposed methodology for gathering consumer views.
Post-moratorium, this research methodology will be repeated and expanded. Individuals with variants that increase their risk of disease, as well as favourable results that negate a family history of disease, will be surveyed to capture levels of understanding of the moratorium, impact of the moratorium on decision-making and experiences with accessing life insurance products. Recruitment will be through support groups and other consumer groups, but the reach will be expanded considerably to groups supporting consumers with a range of genetic conditions, including but not limited to LSA, Pink Hope, Mito Foundation, Familial Hypercholesterolemia Network Australia, Rare Cancers Australia, Genetic Undiagnosed and Rare Disease Network, Rare Voices Australia, and Cancer Council Victoria. With an expanded reach, we expect that the number of participants will exceed the number from the previous survey.
Unaffected individuals who are considering having predictive genetic testing will be surveyed to capture levels of understanding of the moratorium and the impact of the moratorium on decision-making. Decliners will be surveyed to understand reasons for their decision to not have testing.
The PRiMo (using Polygenic Risk Modification to improve breast cancer prevention) trial is recruiting female participants who will be offered genetic testing through Australian Familial Cancer Clinics (FCCs) for breast and ovarian cancer-predisposing genetic variants. Questions regarding knowledge of the moratorium, influence of insurance implications on decisions regarding genetic testing, and experiences with accessing life insurance will be included in the questionnaires received by participants soon after receiving results. Follow-up questions about experiences with accessing life insurance will be included in questionnaires administered at subsequent 6-12 month intervals.
Males attending an FCC and considering predictive genetic testing for adult-onset autosomal dominant conditions, and females considering predictive genetic testing for adult-onset autosomal dominant conditions who are not eligible for PRiMo, will be invited separately to answer questions regarding knowledge of the moratorium, influence of insurance implications on decisions regarding genetic testing, and experiences with accessing life insurance.
For the purposes of the A-GLIMMER project, health professionals (HPs) include any qualified health professional who has direct contact with patients who are considering genetic testing. This includes HPs working in genetics services, such as genetic counsellors and clinical geneticists, as well as other non-genetic HPs who discuss genetic testing with patients, such as nurses and oncologists.
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