Melbourne School of Population and Global Health - Research Publications

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    Unearthing the Learning of Genomic Medicine in the Workplace: a Qualitative Study
    Kim, A ; Nisselle, A ; Weller-Newton, J ; McClaren, B ; Keogh, L (SPRINGER, 2022-07-04)
    Abstract Workplace learning is fundamental in contextualizing theoretical concepts into practice, making it opportune for professionals to learn emerging concepts. With genomic testing transitioning from the research space into healthcare, there are more opportunities to engage with workplace learning related to genomic medicine. We therefore aimed to unearth how genomics was being learnt in the workplace and the opportunities and factors that influenced these learning experiences. Qualitative secondary analysis was applied to a purposive sample of interviews with non-genetic physicians who had reflected on their genomic medicine practice and education. Thematic analysis, guided by Billett’s co-participation at work theory, was conducted to identify workplace learning opportunities related to genomic medicine and any influencing factors. A coding framework was developed and iteratively refined until consensus was reached. Various workplace learning opportunities related to genomic medicine were identified from interviews with 29 physicians. Engagement occurred through established clinical work practice, contextual affordances, and agentic pursuits. Barriers and facilitators influenced participants’ experiences and access with opportunities. Some participants recognized these learning opportunities as “informal”; however, most did not. Opportunities to engage with workplace learning beyond formal training are essential to ensure the medical workforce has the knowledge and confidence to engage with practice-related developments. However, ‘work’ activities were not often recognized as ‘learning’ opportunities. With continued efforts to integrate genomics and other innovations into routine healthcare and help reduce the theory–practice gap, this study adds to our understanding of how workplace learning occurs and offers a platform on which to build a robust model for continuing education.
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    Health professionals' views and experiences of the Australian moratorium on genetic testing and life insurance: A qualitative study.
    Dowling, G ; Tiller, J ; McInerney-Leo, A ; Belcher, A ; Haining, C ; Barlow-Stewart, K ; Boughtwood, T ; Gleeson, P ; Delatycki, MB ; Winship, I ; Otlowski, M ; Jacobs, C ; Keogh, L ; Lacaze, P (Springer Science and Business Media LLC, 2022-11)
    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.
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    Understanding the barriers to, and facilitators of, ovarian toxicity assessment in breast cancer clinical trials
    Cui, W ; Phillips, K-A ; Francis, PA ; Anderson, RA ; Partridge, AH ; Loi, S ; Loibl, S ; Keogh, L (CHURCHILL LIVINGSTONE, 2022-08-01)
    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.
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    The Unethical Texas Heartbeat Law
    Haining, CM ; Keogh, LA ; Savulescu, J (WILEY, 2022-04-09)
    What is already known? The Texas Heartbeat Act, which has been in effect since September 2021, prohibits abortions once a ‘fetal heartbeat’ is detected, except in emergency situations. The law significantly limits access to abortion services in Texas, by essentially prohibiting abortions post 6 weeks' gestation. The law has been subjected to several legal challenges, none of which have been successful to date. What does this article add? This article provides an overview of some of the ethical concerns the law raises and identifies some of the problems the law creates for women, the health profession and society. The article ultimately argues that the law ought to be quashed.
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    Scientific research in news media: a case study of misrepresentation, sensationalism and harmful recommendations
    Dempster, G ; Sutherland, G ; Keogh, L (Sissa Medialab Srl, 2022-01-01)
    Accurate news media reporting of scientific research is important as most people receive their health information from the media and inaccuracies in media reporting can have adverse health outcomes. We completed a quantitative and qualitative analysis of a journal article, the corresponding press release and the online news reporting of a scientific study. Four themes were identified in the press release that were directly translated to the news reports that contributed to inaccuracies: sensationalism, misrepresentation, clinical recommendations and subjectivity. The pressures on journalists, scientists and their institutions has led to a mutually beneficial relationship between these actors that can prioritise newsworthiness ahead of scientific integrity to the detriment of public health.
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    A narrative literature review of the impact of conscientious objection by health professionals on women's access to abortion worldwide 2013-2021
    Davis, JM ; Haining, CM ; Keogh, LA (ROUTLEDGE JOURNALS, TAYLOR & FRANCIS LTD, 2021-12-29)
    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.
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    Exploring Implementation of Personal Breast Cancer Risk Assessments
    Sierra, MA ; Wheeler, JCW ; Devereux, L ; Trainer, AH ; Keogh, L (MDPI, 2021-10-01)
    Personal Breast Cancer (BC) Risk Assessments (PBCRA) have potential to stratify women into clinically-actionable BC risk categories. As this could involve population-wide genomic testing, women's attitudes to PBCRA and views on acceptable implementation platforms must be considered to ensure optimal population participation. We explored these issues with 31 women with different BC risk profiles through semi-structured focus group discussions or interviews. Inductive thematic coding of transcripts was performed. Subsequently, women listed factors that would impact on their decision to participate. Participants' attitudes to PBCRA were positive. Identified themes included that PBCRA acceptance hinges on result actionability. Women value the ability to inform decision-making. Participants reported anxiety, stress, and genetic discrimination as potential barriers. The age at which PBCRA was offered, ease of access, and how results are returned held importance. Most women value the opportunity for PBCRA to inform increased surveillance, while highlighting hesitance to accept reduced surveillance as they find reassurance in regular screening. Women with BRCA pathogenic variants value the potential for PBCRA to identify a lower cancer risk and potentially inform delayed prophylactic surgery. This study highlights complexities in adopting advances in BC early detection, especially for current users who value existing processes as a social good.
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    Does personalized melanoma genomic risk information trigger conversations about skin cancer prevention and skin examination with family, friends and health professionals?
    Smit, AK ; Keogh, LA ; Newson, AJ ; Butow, PN ; Dunlop, K ; Morton, RL ; Kirk, J ; Espinoza, D ; Cust, AE (WILEY, 2017-09-01)
    BACKGROUND: Receiving information about genomic risk of melanoma might trigger conversations about skin cancer prevention and skin examinations. OBJECTIVES: To explore conversations prompted by receiving personalized genomic risk of melanoma with family, friends and health professionals. METHODS: We used a mixed-methods approach. Participants without a personal history and unselected for a family history of melanoma (n = 103, aged 21-69 years, 53% women) completed questionnaires 3 months after receiving a personalized melanoma genomic risk assessment. Semistructured interviews were undertaken with 30 participants in high, average and low genomic risk categories, and data were analysed thematically. RESULTS: From the questionnaires, 74% of participants communicated their genomic risk information with family, and 49% with friends. Communication with a health professional differed by risk level: 41%, 16% and 12% for high, average and low risk, respectively (P = 0·01). Qualitative analysis showed that perceived 'shared risk' and perceived interest of family and friends were motivations for discussing risk or prevention behaviours. The information prompted conversations with family and health professionals about sun protection and skin checks, and general conversations about melanoma risk with friends. Reasons for not discussing with family included existing personal or family health concerns, or existing high levels of sun protection behaviour among family members. CONCLUSIONS: Personalized melanoma genomic risk information can prompt risk-appropriate discussions about skin cancer prevention and skin examinations with family and health professionals. Sharing this information with others might increase its impact on melanoma prevention and skin examination behaviours, and this process could be used to encourage healthy behaviour change within families.
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    "I haven't had to bare my soul but now I kind of have to": describing how voluntary assisted dying conscientious objectors anticipated approaching conversations with patients in Victoria, Australia
    Haining, CM ; Keogh, LA (BMC, 2021-11-12)
    BACKGROUND: Dealing with end of life is challenging for patients and health professionals alike. The situation becomes even more challenging when a patient requests a legally permitted medical service that a health professional is unable to provide due to a conflict of conscience. Such a scenario arises when Victorian health professionals, with a conscientious objection (CO) to voluntary assisted dying (VAD), are presented with patients who request VAD or merely ask about VAD. The Voluntary Assisted Dying Act 2017 (Vic) recognizes the inherent conflict of conscience that may arise for some health professionals when asked to provide VAD and responds by affording broad protection to conscientious objectors who wish to refuse to take part in the VAD process. METHODS: Seventeen semi-structured qualitative interviews were conducted with Victorian health professionals with a self-identified CO to VAD in the lead-up to the implementation of VAD in Victoria. Interviews explored how participants anticipated they would manage their CO in practice. Interviews were transcribed verbatim and analyzed thematically. RESULTS: Our results reveal that the way in which health professionals claimed they would approach CO conversations is variable and was dependant on the strength of their opposition to VAD. We categorized conscientious objectors according to their approach as either dissuasive non-referrers, passive non-referrers, facilitators or negotiators. Our study also explores the perceived difficulties of exercising one's CO as identified by our participants. CONCLUSION: The broad protection offered by the Voluntary Assisted Dying Act 2017 (Vic) encourages a range of behaviors from conscientious objectors, due to the minimal obligations imposed. In order to assist conscientious objectors, more policy, institutional guidance, and education needs to be available to conscientious objectors explicitly addressing how to effectively manage one's CO. Such guidance is imperative to ensuring that their moral integrity is preserved and that they are exercising their CO appropriately.
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    Impact of personal genomic risk information on melanoma prevention behaviors and psychological outcomes: a randomized controlled trial
    Smit, AK ; Allen, M ; Beswick, B ; Butow, P ; Dawkins, H ; Dobbinson, SJ ; Dunlop, KL ; Espinoza, D ; Fenton, G ; Kanetsky, PA ; Keogh, L ; Kimlin, MG ; Kirk, J ; Law, MH ; Lo, S ; Low, C ; Mann, GJ ; Reyes-Marcelino, G ; Morton, RL ; Newson, AJ ; Savard, J ; Trevena, L ; Wordsworth, S ; Cust, AE (SPRINGERNATURE, 2021-08-12)
    PURPOSE: We evaluated the impact of personal melanoma genomic risk information on sun-related behaviors and psychological outcomes. METHODS: In this parallel group, open, randomized controlled trial, 1,025 Australians of European ancestry without melanoma and aged 18-69 years were recruited via the Medicare database (3% consent). Participants were randomized to the intervention (n = 513; saliva sample for genetic testing, personalized melanoma risk booklet based on a 40-variant polygenic risk score, telephone-based genetic counseling, educational booklet) or control (n = 512; educational booklet). Wrist-worn ultraviolet (UV) radiation dosimeters (10-day wear) and questionnaires were administered at baseline, 1 month postintervention, and 12 months postbaseline. RESULTS: At 12 months, 948 (92%) participants completed dosimetry and 973 (95%) the questionnaire. For the primary outcome, there was no effect of the genomic risk intervention on objectively measured UV exposure at 12 months, irrespective of traditional risk factors. For secondary outcomes at 12 months, the intervention reduced sunburns (risk ratio: 0.72, 95% confidence interval: 0.54-0.96), and increased skin examinations among women. Melanoma-related worry was reduced. There was no overall impact on general psychological distress. CONCLUSION: Personalized genomic risk information did not influence sun exposure patterns but did improve some skin cancer prevention and early detection behaviors, suggesting it may be useful for precision prevention. There was no evidence of psychological harm.