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1.
Am J Med Genet A ; 194(6): e63565, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38353314

RESUMO

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.


Assuntos
Testes Genéticos , Seguro de Vida , Pesquisadores , Humanos , Austrália , Testes Genéticos/economia , Pesquisadores/psicologia , Masculino , Feminino , Inquéritos e Questionários , Adulto , Pessoa de Meia-Idade
2.
J Med Genet ; 59(8): 817-826, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-34544841

RESUMO

BACKGROUND: In 2019, the Australian life insurance industry introduced a partial moratorium (ban) limiting the use of genetic test results in life insurance underwriting. The moratorium is industry self-regulated and applies only to policies below certain financial limits (eg, $500 000 of death cover). METHODS: We surveyed Australian health professionals (HPs) who discuss genetic testing with patients, to assess knowledge of the moratorium; reported patient experiences since its commencement; and HP views regarding regulation of genetic discrimination (GD) in Australia. RESULTS: Between April and June 2020, 166 eligible HPs responded to the online survey. Of these, 86% were aware of the moratorium, but <50% had attended related training/information sessions. Only 16% answered all knowledge questions correctly, yet 69% believed they had sufficient knowledge to advise patients. Genetics HPs' awareness and knowledge were better than non-genetics HPs' (p<0.05). There was some reported decrease in patients delaying/declining testing after the moratorium's introduction, however, 42% of HPs disagreed that patients were more willing to have testing post-moratorium. Although many (76%) felt the moratorium resolved some GD concerns, most (88%) still have concerns, primarily around self-regulation, financial limits and the moratorium's temporary nature. Almost half (49%) of HPs reported being dissatisfied with the moratorium as a solution to GD. The majority (95%) felt government oversight is required, and 93% felt specific Australian legislation regarding GD is required. CONCLUSION: While the current Australian moratorium is considered a step forward, most HPs believe it falls short of an adequate long-term regulatory solution to GD in life insurance.


Assuntos
Testes Genéticos , Seguro de Vida , Austrália , Humanos , Inquéritos e Questionários
3.
Reprod Health ; 20(1): 104, 2023 Jul 18.
Artigo em Inglês | MEDLINE | ID: mdl-37464379

RESUMO

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.


Assuntos
Aborto Induzido , Tioguanina , Feminino , Gravidez , Humanos , Vitória , Comitês Consultivos , Aborto Induzido/psicologia , Pesquisa Qualitativa
4.
Genet Med ; 24(1): 146-156, 2022 01.
Artigo em Inglês | MEDLINE | ID: mdl-34906505

RESUMO

PURPOSE: Risk-stratified screening has potential to improve the cost effectiveness of national breast cancer screening programs. This study aimed to inform a socially acceptable and equitable implementation framework by determining what influences a woman's decision to accept a personalized breast cancer risk assessment and what the relative impact of these key determinants is. METHODS: Multicriteria decision analysis was used to elicit the relative weights for 8 criteria that women reported influenced their decision. Preference heterogeneity was explored through cluster analysis. RESULTS: The 2 criteria valued most by the 347 participants related to program access, "Mode of invitation" and "Testing process". Both criteria significantly influenced participation (P < .001). A total of 73% preferred communication by letter/online. Almost all women preferred a multidisease risk assessment with potential for a familial high-risk result. Four preference-based subgroups were identified. Membership to the largest subgroup was predicted by lower educational attainment, and women in this subgroup were concerned with program access. Higher relative perceived breast cancer risk predicted membership to the smallest subgroup that was focused on test parameters, namely "Scope of test" and "Test specificity". CONCLUSION: Overall, Australian women would accept a personalized multidisease risk assessment, but when aligning with their preferences, it will necessitate a focus on program access and the development of online communication frameworks.


Assuntos
Neoplasias da Mama , Programas de Rastreamento , Austrália/epidemiologia , Neoplasias da Mama/diagnóstico , Neoplasias da Mama/genética , Neoplasias da Mama/prevenção & controle , Detecção Precoce de Câncer , Feminino , Humanos , Medição de Risco
5.
J Med Ethics ; 48(8): 517-521, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-34127526

RESUMO

In jurisdictions where voluntary assisted dying (VAD) is legal, eligibility assessments, prescription and administration of a VAD substance are commonly performed by senior doctors. Junior doctors' involvement is limited to a range of more peripheral aspects of patient care relating to VAD. In the Australian state of Victoria, where VAD has been legal since June 2019, all health professionals have a right under the legislation to conscientiously object to involvement in the VAD process, including provision of information about VAD. While this protection appears categorical and straightforward, conscientious objection to VAD-related care is ethically complex for junior doctors for reasons that are specific to this group of clinicians. For junior doctors wishing to exercise a conscientious objection to VAD, their dependence on their senior colleagues for career progression creates unique risks and burdens. In a context where senior colleagues are supportive of VAD, the junior doctor's subordinate position in the medical hierarchy exposes them to potential significant harms: compromising their moral integrity by participating, or compromising their career progression by objecting. In jurisdictions intending to provide all health professionals with meaningful conscientious objection protection in relation to VAD, strong specific support for junior doctors is needed through local institutional policies and culture.


Assuntos
Consciência , Suicídio Assistido , Austrália , Humanos , Corpo Clínico Hospitalar , Princípios Morais , Recusa em Tratar
6.
Qual Health Res ; 32(1): 168-181, 2022 01.
Artigo em Inglês | MEDLINE | ID: mdl-34781775

RESUMO

The reproductive decision-making of young people (aged 15-39 years) with Li-Fraumeni syndrome (LFS), an early onset inherited cancer syndrome, has not been studied in depth. Using interpretive description methodology, we conducted semi-structured interviews with 30 young Australians (mean age 25.5 years) diagnosed with LFS or at 50% genetic risk. With reflexive thematic analysis, we show how young people's reproductive decision-making and ideals for family formation were shaped by a sense of genetic responsibility to ensure the health of future biological kin. Reproductive technology provided choices for family formation in the context of LFS and also complicated reproductive decisions, as these choices were difficult to understand, make, or carry out. We uphold that reproductive decision-making when living with LFS is a profoundly moral practice that may pose significant challenges for young people navigating their formative years. We offer genetic counseling practice recommendations to support individuals with LFS when making reproductive decisions.


Assuntos
Síndrome de Li-Fraumeni , Adolescente , Adulto , Austrália , Predisposição Genética para Doença , Humanos , Síndrome de Li-Fraumeni/genética , Reprodução , Fatores de Risco
7.
Genet Med ; 23(12): 2394-2403, 2021 12.
Artigo em Inglês | MEDLINE | ID: mdl-34385669

RESUMO

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.


Assuntos
Melanoma , Neoplasias Cutâneas , Adolescente , Adulto , Idoso , Austrália , Feminino , Genômica , Humanos , Melanoma/diagnóstico , Melanoma/genética , Melanoma/prevenção & controle , Pessoa de Meia-Idade , Programas Nacionais de Saúde , Neoplasias Cutâneas/genética , Neoplasias Cutâneas/prevenção & controle , Adulto Jovem
8.
Psychooncology ; 30(2): 159-166, 2021 02.
Artigo em Inglês | MEDLINE | ID: mdl-33006205

RESUMO

OBJECTIVE: Tamoxifen has been demonstrated to reduce breast cancer risk in high-risk, premenopausal women. Yet, very few young women with hereditary breast and ovarian cancer syndrome in Australia use tamoxifen, despite this being a less-invasive option compared to risk-reducing mastectomy. This study aims to examine young women's decision-making about and experience of taking tamoxifen to reduce their breast cancer risk. METHODS: Young women with a BRCA1/2 mutation participated in semi-structured qualitative interviews, recruited mainly from a metropolitan clinical genetics service. Data were analysed using an inductive, team-based approach to thematic analysis. RESULTS: Forty interviews with women aged 20-40 years with a BRCA1/2 mutation were conducted. Eleven women could not recall discussing tamoxifen with their healthcare provider or were too young to commence cancer risk management. Twenty-three women chose not to use tamoxifen because it is contraindicated for pregnancy or because it did not offer immediate and great enough risk reduction compared to bilateral risk-reducing mastectomy. Six women who were definite about not wanting to have children during the following 5-year period chose to use tamoxifen, and most experienced none or transient side effects. CONCLUSIONS: Decision-making about tamoxifen was nuanced and informed by considerations characteristic of young adulthood, especially childbearing. Therefore, clinical discussions about tamoxifen with young women with a BRCA1/2 mutation must include consideration of their reproductive plans.


Assuntos
Neoplasias da Mama/prevenção & controle , Tomada de Decisões , Predisposição Genética para Doença/prevenção & controle , Tamoxifeno/uso terapêutico , Adulto , Austrália , Neoplasias da Mama/genética , Feminino , Genes BRCA1 , Genes BRCA2 , Humanos , Pesquisa Qualitativa , Reprodução , Adulto Jovem
9.
Health Expect ; 24(4): 1326-1336, 2021 08.
Artigo em Inglês | MEDLINE | ID: mdl-33974726

RESUMO

BACKGROUND: There is mounting evidence of the benefit of risk-stratified (risk-tailored) cancer population screening, when compared to standard approaches. However, shifting towards this approach involves changes to practice that may give rise to implementation challenges. OBJECTIVES: To explore the public's potential acceptance of risk-stratified screening across different cancer types, including reducing screening frequency if at low risk and the use of personal risk information, to inform implementation strategies. METHOD: Semi-structured interviews were conducted with 40 public participants; half had received personal genomic risk information and half had not. Participants were prompted to consider different cancers. Data were analysed thematically as one dataset. RESULTS: Themes included the following: (a) a sense of security; (b) tailored screening is common sense; (c) risk and the need to take action; (d) not every cancer is the same; and (e) trust and belief in health messages. Both groups expressed similar views. Participants were broadly supportive of risk-stratified screening across different cancer types, with strong support for increased screening frequency for high-risk groups. They were less supportive of reduced screening frequency or no screening for low-risk groups. Findings suggest the public will be amenable to reducing screening when the test is invasive and uncomfortable; be less opposed to forgo screening if offered the opportunity to screen at some stage; and view visible cancers such as melanoma differently. CONCLUSIONS: Approaching distinct cancer types differently, tailoring messages for different audiences and understanding reasons for participating in screening may assist with designing future implementation strategies for risk-stratified cancer screening.


Assuntos
Detecção Precoce de Câncer , Neoplasias , Austrália , Genômica , Humanos , Programas de Rastreamento , Neoplasias/diagnóstico
10.
BMC Med Ethics ; 22(1): 149, 2021 11 12.
Artigo em Inglês | MEDLINE | ID: mdl-34772412

RESUMO

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.


Assuntos
Suicídio Assistido , Atitude do Pessoal de Saúde , Consciência , Pessoal de Saúde , Humanos , Recusa em Tratar , Vitória
11.
BMC Med Ethics ; 22(1): 63, 2021 05 21.
Artigo em Inglês | MEDLINE | ID: mdl-34020638

RESUMO

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.


Assuntos
Seleção Tendenciosa de Seguro , Seguro de Vida , Austrália , Coleta de Dados , Testes Genéticos , Humanos
12.
J Psychosoc Oncol ; 39(1): 54-73, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-32449501

RESUMO

PURPOSE: This study explored the genetic testing experiences of adolescents and young adults (AYAs; aged 15-39 years) with, or at 50% risk of, an early onset cancer predisposition syndrome: Li-Fraumeni syndrome (LFS). DESIGN: We used interpretive description and conducted semi-structured interviews with 30 AYAs (mean age 25.5 years): 26 with LFS and four at 50% risk. Findings were developed using team-based, inductive thematic analysis. FINDINGS: Participants reported genetic testing uptake to reduce uncertainty about their gene status and to access cancer risk management. Learning their gene status, however, introduced a new uncertainty about living with high multi-organ cancer risk. Participants preoccupied with surviving cancer during diagnostic testing underestimated the implications of LFS. Reliance on family at this life stage complicated decision-making for genetic testing, especially among adolescents. CONCLUSION: AYAs undergoing genetic testing for LFS have unique support needs based on their life stage and require developmentally appropriate psychosocial care.


Assuntos
Atitude Frente a Saúde , Testes Genéticos , Síndrome de Li-Fraumeni/genética , Adolescente , Adulto , Feminino , Humanos , Síndrome de Li-Fraumeni/diagnóstico , Síndrome de Li-Fraumeni/psicologia , Masculino , Pesquisa Qualitativa , Incerteza , Adulto Jovem
13.
Health Promot J Austr ; 32 Suppl 2: 29-39, 2021 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-32754972

RESUMO

ISSUE ADDRESSED: Despite widespread calls for women undergoing mammographic screening to be informed of their breast density, concerns remain as to how this is interpreted and acted upon given the absence of evidence-based supplemental screening recommendations for women with dense breasts. This study investigates the action women take in response to being notified they have dense breasts and what subsequent advice women receive from health professionals. METHODS: Via a survey of nearly 7000 women, we assessed the post-screening actions of women attending a population-based mammographic screening program (BreastScreen) in Western Australia from 21 November 2017 to 19 April 2018. Women who reported that they were notified they had dense breasts were compared to controls (where applicable). Descriptive and logistic regression analyses were used to summarise responses from 6,183 women. RESULTS: Half of women notified that they have dense breasts consulted or intended to consult their General Practitioner (GP), particularly those notified for the first time (55%). Of those notified women who consulted their GP, 50% were referred to have supplemental screening. Overall, 20% of women notified as having dense breasts reported that they had an ultrasound due to their breast density. CONCLUSION: Self-reported health service usage after mammographic screening is higher in women who have been notified they have dense breasts. So what? There is growing pressure for screening programs in Australia and internationally to routinely measure and report breast density to participants. Results from this study can inform screening programs of the likely impact of breast density notification on health service usage. While more information is needed to fill knowledge gaps in recommended action for women with dense breasts, the greatest risks to women arise from not being screened. Hence, health promotion practitioners and health providers should continue to encourage women to participate in BreastScreen programs.


Assuntos
Densidade da Mama , Neoplasias da Mama , Neoplasias da Mama/diagnóstico por imagem , Detecção Precoce de Câncer , Feminino , Humanos , Mamografia , Programas de Rastreamento
14.
J Med Ethics ; 2020 May 20.
Artigo em Inglês | MEDLINE | ID: mdl-32434901

RESUMO

Publics are key stakeholders in population genomic screening and their perspectives on ethical considerations are relevant to programme design and policy making. Using semi-structured interviews, we explored social views and attitudes towards possible future provision of personalised genomic risk information to populations to inform prevention and/or early detection of relevant conditions. Participants were members of the public (n=30) who had received information on their personal genomic risk of melanoma as part of a research project. The focus of the analysis presented here is participants' views regarding ethical considerations relevant to population genomic screening more generally. Data were analysed thematically and four key themes related to ethical considerations were identified: (i) personal responsibility for health: 'forewarned is forearmed'; (ii) perceptions of, and responses to, genetic fatalism; (iii) implications for parenting and reproduction; (iv) divided views on choosing to receive genomic risk information. Ethical considerations underlying these themes include the valorisation of information and choice, paternalism, non-directiveness and increasing responsibilisation of individuals in health and healthcare. These findings arguably indicate a thin public conceptualisation of population genomic testing, which draws heavily on how these themes tend to be described in existing social discourses. Findings suggest that further public engagement is required to increase complexity of debate, to consider (for example) the appropriate place of individual and social interests in population genomic testing. Further discernment of relevant ethical approaches, drawing on ethical frameworks from both public health and clinical settings, will also assist in determining the appropriate implementation of population genomic screening for complex conditions.

15.
BMC Public Health ; 20(1): 1028, 2020 Jun 29.
Artigo em Inglês | MEDLINE | ID: mdl-32600382

RESUMO

BACKGROUND: Genomic risk information, based on common genomic susceptibility variants associated with risk of complex diseases such as cancer, may be incorporated into personalised prevention and screening strategies. We aimed to engage with members of the public, who are important stakeholders in this process, to further inform program development and other implementation outcomes such as acceptability and appropriateness. METHODS: Semi-structured interviews were undertaken with 30 participants (aged 24-69 years, 50% female) recruited from a pilot trial in which they received personalised genomic risk information for melanoma. We explored participants' views and attitudes towards offering general personal genomic risk information to the broader population. The data were analysed thematically. RESULTS: Two overarching themes relevant to implementation considerations were identified. Firstly, participants' preferences for accepting an offer of genomic risk information were based on family history, disease incidence and the possibility of prevention. Secondly, participants felt that the processes for offering risk information should be based on individual preferences, triaged according to risk and be supported by a health professional trained in genomics. CONCLUSIONS: Participants felt that offering personal genomic risk information to the general population to inform prevention and early detection recommendations is acceptable, particularly for common, complex conditions such as cancer. Understanding participants' preferences for receiving genomic risk information will assist with communication strategies and health workforce planning. We anticipate that these findings will contribute to the development of implementation strategies for incorporating genomic risk information into routine clinical practice.


Assuntos
Detecção Precoce de Câncer/psicologia , Testes Genéticos , Melanoma/prevenção & controle , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Sujeitos da Pesquisa/psicologia , Adulto , Idoso , Atitude , Ensaios Clínicos como Assunto , Comunicação , Detecção Precoce de Câncer/métodos , Emoções , Feminino , Genômica , Humanos , Masculino , Melanoma/genética , Pessoa de Meia-Idade , Projetos Piloto , Pesquisa Qualitativa , Medição de Risco , Adulto Jovem
16.
J Genet Couns ; 29(5): 737-747, 2020 10.
Artigo em Inglês | MEDLINE | ID: mdl-31872506

RESUMO

Li-Fraumeni syndrome (LFS), a rare cancer syndrome caused by pathogenic germline variants in TP53, has serious implications for adolescents and young adults (AYAs; aged 15-39 years). The early-onset and multi-organ cancer risk associated with LFS means health professionals must concurrently contend with the developmental needs of individuals who are diagnosed from a young age, and recent changes in practice due to advances in whole-body cancer surveillance. To help understand how current practice meets the developmental needs of AYAs with, or at risk of, LFS, we conducted a national online survey to explore the experiences of health professionals who care for this population in Australia and New Zealand. Forty-three respondents completed the survey (56% genetic counselors), one-third of whom had facilitated predictive TP53 testing for minors (n = 14/43, 33%). In hypothetical scenarios describing 15-year-olds eligible for predictive TP53 testing, respondents were more supportive of testing for emotionally mature compared to immature minors (p = .009); and more supportive of adolescent wishes compared to parental wishes for testing (p = .020) when families held discordant views on testing. Genetic health professionals were more likely than oncology health professionals to address psychological (p = .017) and information needs about reproductive options for LFS during consultations than to refer them on (p = .004). All respondents supported comprehensive risk management for LFS, but noted important medical, logistical, and psychosocial limitations for AYAs. This study offers valuable insight into developmentally appropriate practices of Australasian health professionals who care for AYAs with, or at risk of, LFS. These findings suggest they may foster the autonomy of minors undergoing predictive TP53 genetic testing and be supportive of new whole-body risk management guidelines.


Assuntos
Predisposição Genética para Doença , Síndrome de Li-Fraumeni/genética , Síndrome de Li-Fraumeni/terapia , Adolescente , Adulto , Austrália , Feminino , Genes p53 , Aconselhamento Genético , Testes Genéticos , Mutação em Linhagem Germinativa , Pessoal de Saúde , Humanos , Masculino , Nova Zelândia , Pais/psicologia , Prática Profissional , Inquéritos e Questionários , Adulto Jovem
17.
J Genet Couns ; 28(2): 388-397, 2019 04.
Artigo em Inglês | MEDLINE | ID: mdl-30776170

RESUMO

Internationally, the practice of offering additional findings (AFs) when undertaking a clinically indicated genomic test differs. In the USA, the recommendation is to include analysis for AFs alongside diagnostic analysis, unless a patient opts-out, whereas European and Canadian guidelines recommend opt-in models. These guidelines all consider the offer of AFs as an activity concurrent with the offer of diagnostic testing. This paper describes a novel two-step model for managing AFs within the healthcare system in Victoria, Australia and presents the study protocol for its evaluation. Adults who have received results of diagnostic whole exome sequencing undertaken within the healthcare system are invited to attend a genetic counseling appointment to consider reanalysis of their stored genomic data for AFs. The evaluation protocol addresses uptake, decision-making, understanding, counseling challenges, and explores preferences for future models of care. Recruitment commenced in November 2017 and will cease when 200 participants have been approached. When the study is concluded, the evaluation results will contribute to the evidence base guiding approaches to counseling and models of care for AFs.


Assuntos
Aconselhamento Genético/métodos , Genômica , Adulto , Canadá , Tomada de Decisões , Atenção à Saúde , Humanos , Masculino , Guias de Prática Clínica como Assunto , Vitória
18.
BMC Med Ethics ; 20(1): 11, 2019 01 31.
Artigo em Inglês | MEDLINE | ID: mdl-30700292

RESUMO

BACKGROUND: In Victoria, Australia, the law regulating abortion was reformed in 2008, and a clause ('Section 8') was introduced requiring doctors with a conscientious objection to abortion to refer women to another provider. This study reports the views of abortion experts on the operation of Section 8 of the Abortion Law Reform Act in Victoria. METHODS: Nineteen semi-structured qualitative interviews were conducted with purposively selected Victorian abortion experts in 2015. Interviews explored the impact of abortion law reform on service provision, including the understanding and implementation of Section 8. Interviews were transcribed verbatim and analysed thematically. RESULTS: The majority of participants described Section 8 as a mechanism to protect women's right to abortion, rather than a mechanism to protect doctors' rights. All agreed that most doctors would not let moral or religious beliefs impact on their patients, and yet all could detail negative experiences related to Section 8. The negative experiences arose because doctors had: directly contravened the law by not referring; attempted to make women feel guilty; attempted to delay women's access; or claimed an objection for reasons other than conscience. Use or misuse of conscientious objection by Government telephone staff, pharmacists, institutions, and political groups was also reported. CONCLUSION: Some doctors are not complying with Section 8, with adverse effects on access to care for some women. Further research is needed to inform strategies for improving compliance with the law in order to facilitate timely access to abortion services.


Assuntos
Aborto Induzido/ética , Serviços de Planejamento Familiar/ética , Médicos/ética , Recusa em Tratar/ética , Direitos da Mulher/ética , Aborto Induzido/legislação & jurisprudência , Adulto , Atitude do Pessoal de Saúde , Consciência , Dissidências e Disputas , Serviços de Planejamento Familiar/legislação & jurisprudência , Feminino , Humanos , Médicos/psicologia , Gravidez , Recusa em Tratar/legislação & jurisprudência , Religião e Medicina , Estigma Social , Vitória , Direitos da Mulher/legislação & jurisprudência
19.
Rural Remote Health ; 19(4): 5156, 2019 11.
Artigo em Inglês | MEDLINE | ID: mdl-31675244

RESUMO

INTRODUCTION: Abortion has been legal in the Australian state of Victoria since 2008 and medical termination of pregnancy (MTOP) available since 2012. While these developments were expected to improve Victorian rural women's access to abortion, this has not been borne out in practice. General practitioners (GPs), particularly in rural areas, are women's first point of contact when faced with an unintended pregnancy. The objective of this study was to understand rural GPs' knowledge and practice in relation to unintended pregnancy and referral for abortion, using the Grampians region of Victoria as a case study. Parts of this region, like other rural and regional areas, experience teenage pregnancy rates double the national average and more than four times that of major cities, and access to abortion services is known to be limited. Findings from the study will inform rural health service development to improve rural women's access to abortion. METHODS: This article reports on the findings from a mixed methods study which explored GP knowledge, understanding and practice in relation to unintended pregnancy services in seven local government areas in the Grampians. Data were collected between April and August 2017. GPs from all practices in this region were invited to participate. A total of 84 GPs were approached, 23 (27%) completed the survey and, of these, five also took part in a semi-structured telephone interview. The quantitative survey data were analysed descriptively while the open-ended survey responses and qualitative interviews were analysed thematically. RESULTS: Of the GPs surveyed, 38% indicated that they 'refer to a colleague due to a conscientious objection' when women present with an unintended pregnancy. No GP always discussed telehealth medical abortion with women and only 27% said that they 'always' discussed medical abortion with women. A range of views were expressed about the adequacy and location of services, with the majority indicating services in the region were limited or inadequate. Interviews with GPs who had conscientious objections to abortion indicated that 'conscientious objection' occurred in different forms and included a range of behaviours. Rural GPs who were interested in becoming MTOP providers faced barriers such as lack of access to timely ultrasounds and surgical backup. CONCLUSION: The results indicate high levels of conscientious objection and wide variation in knowledge of services. In addition, the provision of tele-abortion and medical abortion is extremely limited in this region, even while these are considered ideal ways to address rural access to abortion. It is likely the promise of tele-abortion is far from fulfilled in the Grampians region and possibly in other rural areas in Victoria. There is a need to improve GPs' knowledge of available services and adherence to legal and professional obligations, and there are clear opportunities to achieve this, with all interview participants expressing strong support for the prevention of unintended pregnancy, and many highlighting the need for good support for women up until the point of termination.


Assuntos
Aborto Induzido/psicologia , Aborto Induzido/estatística & dados numéricos , Clínicos Gerais/psicologia , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Gravidez não Planejada/psicologia , Serviços de Saúde Rural/estatística & dados numéricos , População Rural/estatística & dados numéricos , Adulto , Atitude do Pessoal de Saúde , Feminino , Clínicos Gerais/estatística & dados numéricos , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Gravidez , Vitória
20.
BMC Womens Health ; 18(1): 194, 2018 11 27.
Artigo em Inglês | MEDLINE | ID: mdl-30482186

RESUMO

BACKGROUND: Unplanned pregnancy is a significant problem in Australia. Local data pertaining to use of the levonorgestrel-releasing intra-uterine device (LNG-IUD), and associated factors are limited. The aim of this analysis was to calculate prescribing rates of the LNG-IUD in Australia, including trends in prescribing and associations with socio-demographic factors, in order to increase understanding regarding potential use. METHODS: We examined prescriptions for the LNG-IUD recorded in the national Pharmaceutical Benefits Scheme (PBS) from 2008 to 2012. Prescribing trends were examined according to patient age, remoteness of residential location, and proximity to relevant specialist health services. Associations between these factors and prescription rates were examined using poisson regression. Analyses were stratified by 5-year age-groups. RESULTS: Age-adjusted prescription rates rose from 11.50 per 1000 women aged 15-49 (95% CI: 11.41-11.59) in 2008 to 15.95 (95% CI:15.85-16.01) in 2012. Prescription rates increased most among 15-19-year-olds but remain very low at 2.76 per 1000 women (95% CI: 2.52-3.01). Absolute increases in prescriptions were greatest among 40-44-year-olds, rising from 16.73 per 1000 women in 2008 (95% CI: 16.12-17.34) to 23.77 in 2012 (95% CI: 22.58-24.29). Rates increased significantly within all geographical locations (p < 0.01). Non-metropolitan location was significantly associated with increased prescribing rates, the association diminishing with increasing age groups. CONCLUSIONS: Prescription of LNG-IUD in Australia is very low, especially among young women and those in major cities. Service providers and young women may benefit from targeted education outlining use of the LNG-IUD, strengthened training and referral pathways. Disparities in prescription according to location require further investigation.


Assuntos
Anticoncepcionais Femininos/uso terapêutico , Prescrições de Medicamentos/estatística & dados numéricos , Dispositivos Intrauterinos Medicados/estatística & dados numéricos , Levanogestrel/uso terapêutico , Adolescente , Adulto , Fatores Etários , Austrália , Feminino , Humanos , Pessoa de Meia-Idade , Gravidez , Gravidez não Planejada , Gravidez não Desejada , Adulto Jovem
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