"Uninsurable because of a genetic test": a qualitative study of consumer views about the use of genetic test results in Australian life insurance.

Genetic testing can provide valuable information to mitigate personal disease risk, but the use of genetic results in life insurance underwriting is known to deter many consumers from pursuing genetic testing. In 2019, following Australian Federal Parliamentary Inquiry recommendations, the Financial Services Council (FSC) introduced an industry-led partial moratorium, prohibiting life insurance companies from using genetic test results for policies up to $AUD500,000. We used semi-structured interviews to explore genetic test consumers' experiences and views about the FSC moratorium and the use of genetic results by life insurers. Individuals who participated in an online survey and agreed to be re-contacted to discuss the issue further were invited. Interviews were 20-30-min long, conducted via video conference, transcribed verbatim and analysed using inductive content analysis. Twenty-seven participants were interviewed. Despite the moratorium, concerns about genetic discrimination in life insurance were prevalent. Participants reported instances where life insurers did not consider risk mitigation when assessing risk for policies based on genetic results, contrary to legal requirements. Most participants felt that the moratorium provided inadequate protection against discrimination, and that government legislation regulating life insurers' use of genetic results is necessary. Many participants perceived the financial limits to be inadequate, given the cost-of-living in Australia. Our findings indicate that from the perspective of participants, the moratorium has not been effective in allaying fears about genetic discrimination or ensuring adequate access to life insurance products. Concern about genetic discrimination in life insurance remains prevalent in Australia.

Health providers' reasons for participating in abortion care: A scoping review.

BACKGROUND: There is a global shortage of health providers in abortion care. Public discourse presents abortion providers as dangerous and greedy and links 'conscience' with refusal to participate. This may discourage provision. A scoping review of empirical evidence is needed to inform public perceptions of the reasons that health providers participate in abortion. OBJECTIVE: The study aimed to identify what is known about health providers' reasons for participating in abortion provision. ELIGIBILITY CRITERIA: Studies were eligible if they included health providers' reasons for participating in legal abortion provision. Only empirical studies were eligible for inclusion. SOURCES OF EVIDENCE: We searched the following databases from January 2000 until January 2022: Medical Literature Analysis and Retrieval System Online, Excerpta Medica Database, Cumulative Index to Nursing and Allied Health Literature, ScienceDirect and Centre for Agricultural and Biosciences International Abstracts. Grey literature was also searched. METHODS: Dual screening was conducted of both title/abstract and full-text articles. Health providers' reasons for provision were extracted and grouped into preliminary categories based on the existing research. These categories were revised by all authors until they sufficiently reflected the extracted data. RESULTS: From 3251 records retrieved, 68 studies were included. In descending order, reasons for participating in abortion were as follows: supporting women's choices and advocating for women's rights (76%); being professionally committed to participating in abortion (50%); aligning with personal, religious or moral values (39%); finding provision satisfying and important (33%); being influenced by workplace exposure or support (19%); responding to the community needs for abortion services (14%) and participating for practical and lifestyle reasons (8%). CONCLUSION: Abortion providers participated in abortion for a range of reasons. Reasons were mainly focused on supporting women's choices and rights; providing professional health care; and providing services that aligned with the provider's own personal, religious or moral values. The findings provided no evidence to support negative portrayals of abortion providers present in public discourse. Like conscientious objectors, abortion providers can also be motivated by conscience.

Australian researcher's perspectives on the Australian industry-led moratorium on genetic tests in life insurance.

Fear of insurance discrimination can inhibit genetic research participation. In 2019, an industry-led partial moratorium on using genetic results in Australian life insurance underwriting was introduced. This mixed-methods study used online surveys (n = 59 participants) and semi-structured interviews (n = 22 participants) to capture researchers' perceptions about the moratorium. 66% (n = 39/59) were aware of the moratorium before the survey. Of researchers returning genetic results, 56% (n = 22/39) reported that insurance implications were mentioned in consent forms, but a minority reported updating consent forms post-moratorium (n = 13/39, 33%). Most researchers reported that concerns regarding life insurers utilizing research results inhibited recruitment (35/59, 59%), and few perceived that the moratorium positively influenced participation (n = 9/39, 23%). These findings were supported by qualitative findings which revealed that genetic discrimination concerns were a major issue for some individuals, though these concerns could be eclipsed by the promise of a diagnosis through research participation. The majority thought a regulatory solution should be permanent (n = 34/51, 67%), have financial limits of at least ≥1,000,000 AUD (37/51, 73%), and involve government oversight/legislation (n = 44/51, 86%). In an era where an increasing number of research studies involve genomics as a primary or secondary objective, it is crucial that we have regulatory solutions to address participants' hesitation.

Acceptability of risk-tailored cancer screening among Australian GPs: a qualitative study.

BACKGROUND: Cancer screening that is tailored to individual risk has the potential to improve health outcomes and reduce screening-related harms, if implemented well. However, successful implementation depends on acceptability, particularly as this approach will require GPs to change their practice. AIM: To explore Australian GPs' views about the acceptability of risk-tailored screening across cancer types and to identify barriers to and facilitators of implementation. DESIGN AND SETTING: A qualitative study using semi-structured interviews with Australian GPs. METHOD: Interviews were carried out with GPs and audio-recorded and transcribed. Data were first analysed inductively then deductively using an implementation framework. RESULTS: Participants (n = 20) found risk-tailored screening to be acceptable in principle, recognising potential benefits in offering enhanced screening to those at highest risk. However, they had significant concerns that changes in screening advice could potentially cause confusion. They also reported that a reduced screening frequency or exclusion from a screening programme for those deemed low risk may not initially be acceptable, especially for common cancers with minimally invasive screening. Other reservations about implementing risk-tailored screening in general practice included a lack of high-quality evidence of benefit, fear of missing the signs or symptoms of a patient's cancer, and inadequate time with patients. While no single preferred approach to professional education was identified, education around communicating screening results and risk stratification was considered important. CONCLUSION: GPs may not currently be convinced of the net benefits of risk-tailored screening. Development of accessible evidence-based guidelines, professional education, risk calculators, and targeted public messages will increase its feasibility in general practice.

Community concerns about genetic discrimination in life insurance persist in Australia: A survey of consumers offered genetic testing.

Fears of genetic discrimination in life insurance continue to deter some Australians from genetic testing. In July 2019, the life insurance industry introduced a partial, self-regulated moratorium restricting the use of genetic results in underwriting, applicable to policies up to certain limits (eg AUD$500,000 for death cover).We administered an online survey to consumers who had taken, or been offered, clinical genetic testing for adult-onset conditions, to gather views and experiences about the moratorium and the use of genetic results in life insurance, including its regulation.Most respondents (n = 367) had undertaken a genetic test (89%), and had a positive test result (76%; n = 243/321). Almost 30% (n = 94/326) reported testing after 1 July 2019. Relatively few respondents reported knowing about the moratorium (16%; n = 54/340) or that use of genetic results in life insurance underwriting is legal (17%; n = 60/348). Only 4% (n = 14/350) consider this practice should be allowed. Some respondents reported ongoing difficulties accessing life insurance products, even after the moratorium. Further, discrimination concerns continue to affect some consumers' decision-making about having clinical testing and applying for life insurance products, despite the Moratorium being in place. Most respondents (88%; n = 298/340) support the introduction of legislation by the Australian government to regulate this issue.Despite the introduction of a partial moratorium in Australia, fears of genetic discrimination persist, and continue to deter people from genetic testing. Consumers overwhelmingly consider life insurers should not be allowed to use genetic results in underwriting, and that federal legislation is required to regulate this area.

Acceptability and appropriateness of a risk-tailored organised melanoma screening program: Qualitative interviews with key informants.

INTRODUCTION: In Australia, opportunistic screening (occurring as skin checks) for the early detection of melanoma is common, and overdiagnosis is a recognised concern. Risk-tailored cancer screening is an approach to cancer control that aims to provide personalised screening tailored to individual risk. This study aimed to explore the views of key informants in Australia on the acceptability and appropriateness of risk-tailored organised screening for melanoma, and to identify barriers, facilitators and strategies to inform potential future implementation. Acceptability and appropriateness are crucial, as successful implementation will require a change of practice for clinicians and consumers. METHODS: This was a qualitative study using semi-structured interviews. Key informants were purposively selected to ensure expertise in melanoma early detection and screening, prioritising senior or executive perspectives. Consumers were expert representatives. Data were analysed deductively using the Tailored Implementation for Chronic Diseases (TICD) checklist. RESULTS: Thirty-six participants were interviewed (10 policy makers; 9 consumers; 10 health professionals; 7 researchers). Key informants perceived risk-tailored screening for melanoma to be acceptable and appropriate in principle. Barriers to implementation included lack of trial data, reluctance for low-risk groups to not screen, variable skill level in general practice, differing views on who to conduct screening tests, confusing public health messaging, and competing health costs. Key facilitators included the perceived opportunity to improve health equity and the potential cost-effectiveness of a risk-tailored screening approach. A range of implementation strategies were identified including strengthening the evidence for cost-effectiveness, engaging stakeholders, developing pathways for people at low risk, evaluating different risk assessment criteria and screening delivery models and targeted public messaging. CONCLUSION: Key informants were supportive in principle of risk-tailored melanoma screening, highlighting important next steps. Considerations around risk assessment, policy and modelling the costs of current verses future approaches will help inform possible future implementation of risk-tailored population screening for melanoma.

Gut feelings and lived experiences: a qualitative study of 'anti-diet' dietitians' and psychologists' motivations and experiences regarding the weight-neutral approach.

This paper examines whether the motivations and experiences of 'anti-diet' dietitians and psychologists represent a paradigm shift in healthcare. We conducted four 2-hour, discipline-specific focus groups with a total of 16 female participants residing in Australia. Our reflexive thematic analysis generated four themes that we consider to be stages of a weight-neutral paradigm shift: (1) a recognition of a mismatch between one's weight-centred training and one's lived experience of diet culture, which subsequently informs (2) gut feelings that influence their decision to reject the weight-centric paradigm, thereby leading to (3) exploring the anti-diet knowledge base and then subsequently (4) promoting or advocating for the weight neutral paradigm. Our findings represent a four-stage paradigm shift in action; emphasising the significance of lived experience in the weight-neutral turn, as well as differences in symbolic power between health professionals. Future research should focus on potential ruptures or conflicts within the weight-neutral paradigm itself, and look more deeply into the experiences of other health professionals who are critical of the weight-centred approach.

Financial Advisers' and Key Informants' Perspectives on the Australian Industry-Led Moratorium on Genetic Tests in Life Insurance.

INTRODUCTION: Genetic discrimination (GD) in the context of life insurance is a perennial concern in Australia and internationally. To address such concerns in Australia, an industry self-regulated Moratorium on Genetic Tests in Life Insurance was introduced in 2019 to restrict life insurers from using genetic test results in underwriting for policies under certain limits. Financial advisers (FAs) are sometimes engaged by clients to provide financial advice and assist them to apply for life insurance. They are therefore well-placed to comment on GD and the operation of the Moratorium. Despite this, the financial advising sector in Australia has yet to be studied empirically with regards to GD and the Moratorium. This study aims to capture this perspective by reporting on interviews with the financial advising sector. METHODS: Ten semi-structured qualitative interviews were conducted with FAs and key informants and were analysed using thematic analysis. CONCLUSION(S): Participants' level of awareness and understanding of the Moratorium varied. Participants reported mixed views on the Moratorium's effectiveness, how it operates in practice, and perceived industry compliance. Participants also provided reflections on Australia's current approach to regulating GD, with most participants supporting the concept of industry self-regulation but identifying a need for this to be supplemented with external oversight and meaningful recourse mechanisms for consumers. Our results suggest that there is scope to increase FAs' awareness of GD, and that further research, consultation, and policy consideration are required to identify an optimal regulatory response to GD in Australia.

Impact of a risk based breast screening decision aid on understanding, acceptance and decision making.

Internationally, population breast cancer screening is moving towards a risk-stratified approach and requires engagement and acceptance from current and future screening clients. A decision aid ( www.defineau.org ) was developed based on women's views, values, and knowledge regarding risk-stratified breast cancer screening. This study aims to evaluate the impact of the decision aid on women's knowledge, risk perception, acceptance of risk assessment and change of screening frequency, and decision-making. Here we report the results of a pre and post-survey in which women who are clients of BreastScreen Victoria were invited to complete an online questionnaire before and after viewing the decision aid. 3200 potential participants were invited, 242 responded with 127 participants completing both surveys. After reviewing the decision aid there was a significant change in knowledge, acceptance of risk-stratified breast cancer screening and of decreased frequency screening for lower risk. High levels of acceptance of risk stratification, genetic testing and broad support for tailored screening persisted pre and post review. The DEFINE decision aid has a positive impact on acceptance of lower frequency screening, a major barrier to the success of a risk-stratified program and may contribute to facilitating change to the population breast screening program in Australia.

Institutional Objection to Voluntary Assisted Dying in Victoria, Australia: An Analysis of Publicly Available Policies.

BACKGROUND: Victoria was the first Australian state to legalize voluntary assisted dying (elsewhere known as physician-assisted suicide and euthanasia). Some institutions indicated they would not participate in voluntary assisted dying. The Victorian government issued policy approaches for institutions to consider OBJECTIVE: To describe and analyse publicly available policy documents articulating an institutional objection to voluntary assisted dying in Victoria. METHODS: Policies were identified using a range of strategies, and those disclosing and discussing the nature of an institutional objection were thematically analysed using the framework method. RESULTS: The study identified fifteen policies from nine policymakers and developed four themes: (1) extent of refusal to participate in VAD, (2) justification for refusal to provide VAD, (3) responding to requests for VAD, and (4) appeals to state-sanctioned regulatory mechanisms. While institutional objections were stated clearly, there was very little practical detail in most documents to enable patients to effectively navigate objections in practice. CONCLUSION: This study demonstrates that despite having clear governance pathways developed by centralized bodies (namely, the Victorian government and Catholic Health Australia), many institutions' public-facing policies do not reflect this guidance. Since VAD is contentious, laws governing institutional objection could provide greater clarity and regulatory force than policies alone to better balance the interests of patients and non-participating institutions.

'The tabloid test': a qualitative interview study on the function and purpose of termination of pregnancy review committees in Victoria, Australia.

BACKGROUND: Termination of pregnancy (TOP) is not an uncommon procedure. Availability varies greatly between jurisdictions; however, additional institutional processes beyond legislation can also impact care and service delivery. This study serves to examine the role institutional processes can play in the delivery of TOP services, in a jurisdiction where TOP is lawful at all gestations (Victoria, Australia). As per the Abortion Law Reform Act 2008, TOPs post-24 weeks require the approval of two medical practitioners. However, in Victoria, hospitals that offer post-24 week TOPs generally require these cases to additionally go before a termination review committee for assessment prior to the service being provided. These committees are not stipulated in legislation. Information about these committees and how they operate is scarce and there is minimal information available to the public. METHODS: To trace the history, function, and decision-making processes of these committees, we conducted a qualitative interview study. We interviewed 27 healthcare professionals involved with these committees. We used purposive sampling to gain perspectives from a range of professions across 10 hospitals. Interviews were transcribed verbatim, identifying details removed and inductive thematic analysis was performed. RESULTS: Here, we report the three main functions of the committees as described by participants. The functions were to protect: (1) outward appearances; (2) inward functionality; and/or, (3) service users. Function (1) could mean protecting the hospital's reputation, with the "Herald Sun test"-whether the TOP would be acceptable to readers of the Herald Sun, a tabloid newspaper-used as a heuristic. Function (2) related to logistics within the hospital and protecting the psychological wellbeing and personal reputation of healthcare professionals. The final function (3) related to ensuring patients received a high standard of care. CONCLUSIONS: The primary functions of these committees appear to be about protecting hospitals and clinicians within a context where these procedures are controversial and stigmatized. The results of this study provide further clarity on the processes involved in the provision of TOPs at later gestations from the perspectives of the healthcare professionals involved. Institutional processes beyond those required by legislation are put in place by hospitals. These findings highlight the additional challenges faced by patients and their providers when seeking TOP at later gestations.

Abortion can be difficult to access. In Victoria, Australia, under the law, abortion is allowed at any time during a pregnancy­although after you have been pregnant for more than 24 weeks, the approval of two doctors is required. However, hospitals in Victoria that offer late abortions require more than the approval of two doctors. Hospitals have put in place committees that review each case and make a decision about whether the hospital will provide the abortion. There is not a lot of information about these committees­we do not know exactly why they exist, what they are for, or how they work. To find out, we interviewed doctors and other healthcare professionals (like midwives) who were involved in these committees. In this paper, we report the reasons these people gave for why the committees exist and what they are for. There were three main reasons. The first purpose of the committee is so the hospital does not get criticised in newspapers or by other people outside the hospital for performing these late abortions. The second reason is to help and protect those inside the hospital. For example, having a committee means that the doctors do not have to make the decisions themselves. People also said that the committees think about how the staff are feeling. The third reason is so that the hospitals provide the best care they can, and that they can continue to provide late abortions in the future. With this study, we found out some more important information about these committees that we did not have before. What we found shows that it is not just the law that matters­other things can also affect whether you can get an abortion.

Institutional objection to abortion: A mixed-methods narrative review.

Institutional objection (IO) occurs when institutions providing health care claim objector status and refuse to provide legally permissible health services such as abortion. IO may be regulated by sources including law, ethical codes and policies (including State and local/institutional policies). We conducted a mixed-methods narrative review of the empirical evidence exploring IO to abortion provision globally, to inform areas for further research. MEDLINE (Ovid), Embase (Ovid), CINAHL (EBSCO), Global Health (CAB Abstracts), ScienceDirect and Scopus were searched in August 2021 using keywords including 'conscientious objection', 'faith-based organizations', 'religious hospitals' and 'abortion'. Eligible research focused on clinicians' attitudes and experiences of IO to abortion. The 28 studies included in the review were from nine countries: United States (19), Chile (2), Turkey (1), Argentina (1), Australia (1), Colombia (1), Ghana (1), Poland (1) and South Africa (1). The analysis demonstrated that IO was claimed in a range of countries, despite different legislative and policy frameworks. There was strong evidence from the United States that clinicians in religious healthcare institutions were less likely to provide abortions and abortion referrals, and that training of future abortion providers was negatively affected by IO. Qualitative evidence from other countries showed that IO was claimed by secular as well as religious institutions, and individual conscientious objection could be used as a mechanism for imposing IO. Further research is needed to explore whether IO is morally justified, how decisions are made to claim IO, and on what grounds. Finally, appropriate models for regulating IO are needed to ensure the protection of women's access to abortion. Such models could be informed by those used to regulate IO in other contexts, such as voluntary assisted dying.

Views of the Australian public on the delivery of risk-stratified cancer screening in the population: a qualitative study.

Objective and importance of study: Risk-stratified approaches to cancer screening aim to provide tailored risk advice to individuals, rather than the mostly one-size-fits-all approach designed for the average person that is currently used in Australia. Stratified cancer screening has the potential to increase the benefits and reduce the harms of screening. Initial risk assessment is a crucial first step for screening programs that use risk stratification. We report findings from a qualitative study exploring the views of the Australian public on how to best deliver risk-stratified cancer screening in the population to help inform future implementation. STUDY TYPE: Qualitative interview study. METHODS: We conducted semistructured interviews with participants from a previous study, half of whom had received personal genomic risk information and half of whom had not. We asked how and where they would like to see risk-stratified screening delivered and how they felt about different health professionals assessing their cancer risk. Data were analysed thematically. RESULTS: Forty interviews were conducted. The age range of participants was 21-68 years; 58% were female. Themes included: 1) Convenience is a priority; 2) General practice is a good fit for some; 3) Web-based technology is part of the process; and 4) "I would want to know why [I was being stratified]". Similar views were expressed by both groups. Our findings suggest that although health professionals were identified as having an important role, there were mixed preferences for delivery by general practitioners, medical specialists or nurses. Participants were less concerned about who undertook the risk assessment than whether the health professional had the appropriate skill set and availability. Clear communication and evidence of the need for change in screening eligibility and frequency were key factors in the successful delivery of risk-stratified screening. CONCLUSION: We identified that convenience and good communication, including clear explanations to the public with convincing evidence for change, will enable the successful delivery of risk-stratified cancer screening in the population, including organised and opportunistic screening approaches. Health professional education and upskilling across disciplines will be key facilitators. Engagement and further consultation with primary care and other key stakeholders will be central.

Health professionals' views and experiences of the Australian moratorium on genetic testing and life insurance: A qualitative study.

Australian life insurance companies can legally use genetic test results in underwriting, which can lead to genetic discrimination. In 2019, the Financial Services Council (Australian life insurance industry governing body) introduced a partial moratorium restricting the use of genetic testing in underwriting policies ≤ $500,000 (active 2019-2024). Health professionals (HPs), especially clinical geneticists and genetic counsellors, often discuss the implications of genetic testing with patients, and provide critical insights into the effectiveness of the moratorium. Using a sequential explanatory mixed methods design, we interviewed 23 Australian HPs, who regularly discuss genetic testing with patients and had previously completed an online survey about genetic testing and life insurance. Interviews explored views and experiences about the moratorium, and regulation, in greater depth. Interview transcripts were analysed using thematic analysis. Two key themes emerged from views expressed by HPs during interviews (about matters reported to or observed by them): 1) benefits of the moratorium, and 2) concerns about the moratorium. While HPs reported that the moratorium reassures some consumers, concerns include industry self-regulation, uncertainty created by the temporary time period, and the inadequacy of the moratorium's financial limits for patients' financial needs. Although a minority of HPs felt the current industry self-regulated moratorium is an adequate solution to genetic discrimination, the vast majority (19/23) expressed concern with industry self-regulation and most felt government regulation is required to adequately protect consumers. HPs in Australia are concerned about the adequacy of the FSC moratorium with regards to consumer protections, and suggest government regulation is required.

Understanding the barriers to, and facilitators of, ovarian toxicity assessment in breast cancer clinical trials.

BACKGROUND: Detailed toxicity data are routinely collected in breast cancer (BC) clinical trials. However, ovarian toxicity is infrequently assessed, despite the adverse impacts on fertility and long-term health from treatment-induced ovarian insufficiency. OBJECTIVES: To determine the barriers to and facilitators of ovarian toxicity assessment in BC trials of anti-cancer drugs. METHODS: Semi-structured interviews were conducted with purposively selected stakeholders from multiple countries involved in BC clinical trials (clinicians, consumers, pharmaceutical company representatives, members of drug-regulatory agencies). Participants were asked to describe the perceived benefits and barriers to evaluating ovarian toxicity. Interviews were transcribed verbatim, coded in NVivo software and analysed using inductive thematic analysis. RESULTS: Saturation of the main themes was reached and the final sample size included 25 participants from 14 countries (9 clinicians, 7 consumers, 5 members of regulatory agencies, 4 pharmaceutical company representatives); half were female. The main reported barrier to ovarian toxicity assessment was that the issue was rarely considered. Reasons included that these data are less important than survival data and are not required for regulatory approval. Overall, most participants believed evaluating the impact of BC treatments on ovarian function is valuable. Suggested strategies to increase ovarian toxicity assessment were to include it in clinical trial design guidelines and stakeholder advocacy. CONCLUSION: Lack of consideration about measuring ovarian toxicity in BC clinical trials that include premenopausal women suggest that guidelines and stronger advocacy from stakeholders, including regulators, would facilitate its more frequent inclusion in future trials, allowing women to make better informed treatment decisions.

A narrative literature review of the impact of conscientious objection by health professionals on women's access to abortion worldwide 2013-2021.

Conscientious objection to provide abortion has been enshrined in laws and policies globally. Insufficient attention has been paid to the direct and indirect ways in which conscientious objection compromises women's access to a lawful abortion. Using a systematic search strategy, this narrative literature review synthesises the literature exploring conscientious objection's impact on women's access to abortion in a range of countries. This narrative literature review builds on an extensive literature review published by Chavkin et al. (2013. Conscientious objection and refusal to provide reproductive healthcare: A white paper examining prevalence, health consequences, and policy responses. International Journal of Gynecology & Obstetrics, 123, S41-S56. https://doi.org/10.1016/S0020-7292(13)60002-8). Searches were undertaken on the Medline (Ovid), Global Health, CINAHL, Scopus and Science Direct databases. Thirty six papers were included for thematic analysis. Conscientious objection to abortion was found to impact women's access to abortion at three main levels: the practitioner level, the healthcare system level and the sociocultural environment level. Conscientious objection was found to impact access directly through attempts by health professionals to restrict access, and indirectly by exacerbating pre-existing barriers to access. Further research is required to better quantify the extent to which this impacts women and whether interventions are effective in reducing the barriers that conscientious objection creates and exacerbates.