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1.
J Med Genet ; 59(8): 817-826, 2022 08.
Artículo en Inglés | MEDLINE | ID: mdl-34544841

RESUMEN

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.


Asunto(s)
Pruebas Genéticas , Seguro de Vida , Australia , Humanos , Encuestas y Cuestionarios
2.
Qual Health Res ; 32(1): 168-181, 2022 01.
Artículo en Inglés | MEDLINE | ID: mdl-34781775

RESUMEN

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.


Asunto(s)
Síndrome de Li-Fraumeni , Adolescente , Adulto , Australia , Predisposición Genética a la Enfermedad , Humanos , Síndrome de Li-Fraumeni/genética , Reproducción , Factores de Riesgo
3.
Psychooncology ; 30(2): 159-166, 2021 02.
Artículo en Inglés | MEDLINE | ID: mdl-33006205

RESUMEN

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.


Asunto(s)
Neoplasias de la Mama/prevención & control , Toma de Decisiones , Predisposición Genética a la Enfermedad/prevención & control , Tamoxifeno/uso terapéutico , Adulto , Australia , Neoplasias de la Mama/genética , Femenino , Genes BRCA1 , Genes BRCA2 , Humanos , Investigación Cualitativa , Reproducción , Adulto Joven
4.
J Psychosoc Oncol ; 39(1): 54-73, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-32449501

RESUMEN

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.


Asunto(s)
Actitud Frente a la Salud , Pruebas Genéticas , Síndrome de Li-Fraumeni/genética , Adolescente , Adulto , Femenino , Humanos , Síndrome de Li-Fraumeni/diagnóstico , Síndrome de Li-Fraumeni/psicología , Masculino , Investigación Cualitativa , Incertidumbre , Adulto Joven
5.
J Genet Couns ; 29(5): 737-747, 2020 10.
Artículo en Inglés | MEDLINE | ID: mdl-31872506

RESUMEN

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.


Asunto(s)
Predisposición Genética a la Enfermedad , Síndrome de Li-Fraumeni/genética , Síndrome de Li-Fraumeni/terapia , Adolescente , Adulto , Australia , Femenino , Genes p53 , Asesoramiento Genético , Pruebas Genéticas , Mutación de Línea Germinal , Personal de Salud , Humanos , Masculino , Nueva Zelanda , Padres/psicología , Práctica Profesional , Encuestas y Cuestionarios , Adulto Joven
6.
BMC Womens Health ; 18(1): 194, 2018 11 27.
Artículo en Inglés | MEDLINE | ID: mdl-30482186

RESUMEN

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.


Asunto(s)
Anticonceptivos Femeninos/uso terapéutico , Prescripciones de Medicamentos/estadística & datos numéricos , Dispositivos Intrauterinos Medicados/estadística & datos numéricos , Levonorgestrel/uso terapéutico , Adolescente , Adulto , Factores de Edad , Australia , Femenino , Humanos , Persona de Mediana Edad , Embarazo , Embarazo no Planeado , Embarazo no Deseado , Adulto Joven
7.
J Behav Med ; 40(4): 583-594, 2017 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-28197815

RESUMEN

While medical research continues to investigate the genetic basis of cancer, and personalised prevention gains momentum, little research has been conducted with the individuals who decline predictive genetic testing for cancer. We recruited individuals who had been offered genetic testing for Lynch syndrome or bi-allelic MUTYH mutations due to their participation in a large, population-based, Australia-wide colorectal cancer study. Thirty-three individuals in mutation-carrying families, unaffected by cancer, who had actively or passively declined testing at one of four decision-making points, took part in a qualitative interview about their decision. Data analysis revealed a typology of 'decliners': (1) uninformed about genetic testing; (2) a weak intention to undergo genetic testing; (3) conditionally declining; and (4) unconditionally declining testing. In this population we found substantial barriers to achieving the benefits promised by predictive genetic testing; a lack of knowledge of the availability of genetic testing; a lack of trust in genetic test information; a desire to see a stronger benefit from genetic testing before proceeding; and a sense that there may be more negative than positive outcomes from genetic testing. These discourses must be addressed if medical research on the genetic basis of cancer continues to be funded, and personalised prevention of cancer continues to be recommended by experts.


Asunto(s)
Neoplasias Colorrectales Hereditarias sin Poliposis/genética , Neoplasias Colorrectales/genética , ADN Glicosilasas/genética , Pruebas Genéticas , Mutación , Revelación de la Verdad , Adulto , Anciano , Australia , Femenino , Humanos , Masculino , Persona de Mediana Edad
9.
Health Expect ; 19(6): 1203-1214, 2016 12.
Artículo en Inglés | MEDLINE | ID: mdl-26332492

RESUMEN

BACKGROUND: Personalized genomic risk information has the potential to motivate behaviour change and promote population health, but the success of this will depend upon effective risk communication strategies. OBJECTIVE: To determine preferences for different graphical and written risk communication formats, and the delivery of genomic risk information including the mode of communication and the role of health professionals. DESIGN: Focus groups, transcribed and analysed thematically. PARTICIPANTS: Thirty-four participants from the public. METHODS: Participants were provided with, and invited to discuss, a hypothetical scenario giving an individual's personalized genomic risk of melanoma displayed in several graphical formats. RESULTS: Participants preferred risk formats that were familiar and easy to understand, such as a 'double pie chart' and '100 person diagram' (pictograph). The 100 person diagram was considered persuasive because it humanized and personalized the risk information. People described the pie chart format as resembling bank data and food (such as cake and pizza). Participants thought that email, web-based platforms and postal mail were viable options for communicating genomic risk information. However, they felt that it was important that a health professional (either a genetic counsellor or 'informed' general practitioner) be available for discussion at the time of receiving the risk information, to minimize potential negative emotional responses and misunderstanding. Face-to-face or telephone delivery was preferred for delivery of high-risk results. CONCLUSIONS: These public preferences for communication strategies for genomic risk information will help to guide translation of genome-based knowledge into improved population health.


Asunto(s)
Comunicación , Genómica , Melanoma/prevención & control , Prioridad del Paciente , Neoplasias Cutáneas/prevención & control , Anciano , Anciano de 80 o más Años , Femenino , Grupos Focales , Conocimientos, Actitudes y Práctica en Salud , Humanos , Difusión de la Información , Masculino , Persona de Mediana Edad , Nueva Gales del Sur , Medición de Riesgo , Factores de Riesgo
10.
BMC Public Health ; 16(Suppl 3): 1030, 2016 10 31.
Artículo en Inglés | MEDLINE | ID: mdl-28185550

RESUMEN

BACKGROUND: The Australian Longitudinal Study on Male Health (Ten to Men) was established in 2011 to build the evidence base on male health to inform policy and program development. METHODS: Ten to Men is a national longitudinal study with a stratified multi-stage cluster random sample design and oversampling in rural and regional areas. Household recruitment was conducted from October 2013 to July 2014. Males who were aged 10 to 55 years residing in private dwellings were eligible to participate. Data were collected via self-completion paper questionnaires (participants aged 15 to 55) and by computer-assisted personal interview (boys aged 10 to 14). Household and proxy health data for boys were collected from a parent via a self-completion paper-based questionnaire. Questions covered socio-demographics, health status, mental health and wellbeing, health behaviours, social determinants, and health knowledge and service use. RESULTS: A cohort of 15,988 males aged between 10 and 55 years was recruited representing a response fraction of 35 %. CONCLUSION: Ten to Men is a unique resource for investigating male health and wellbeing. Wave 1 data are available for approved research projects.


Asunto(s)
Estado de Salud , Salud del Hombre , Adolescente , Adulto , Australia , Niño , Composición Familiar , Femenino , Conductas Relacionadas con la Salud , Humanos , Estudios Longitudinales , Masculino , Salud Mental , Persona de Mediana Edad , Aceptación de la Atención de Salud , Población Rural , Determinantes Sociales de la Salud , Encuestas y Cuestionarios , Adulto Joven
11.
BMC Womens Health ; 15: 72, 2015 Sep 10.
Artículo en Inglés | MEDLINE | ID: mdl-26359250

RESUMEN

BACKGROUND: Australia has high rates of teenage pregnancy compared with many Western countries. Long-acting reversible contraception (LARC) offers an effective method to help decrease unintended pregnancies; however, current uptake remains low. The aim of this study was to investigate barriers to LARC use by young women in Australia. METHODS: Healthcare professionals were recruited through publicly available sources and snowball sampling to complete an interview about young women's access to and use of LARC. The sample consisted of general practitioners, nurses, medical directors of reproductive and sexual health organisations, a sexual health educator, and health advocates. In addition, four focus groups about LARC were conducted with young women (aged 17-25 years) recruited via health organisations and a university. The data were analysed thematically. RESULTS: Fifteen healthcare professionals were interviewed and four focus groups were conducted with 27 young women. Shared barriers identified included norms, misconceptions, bodily consequences, and LARC access issues. An additional barrier identified by young women was a perceived lack of control over hormones entering the body from LARC devices. Healthcare professionals also raised as a barrier limited confidence and support in LARC insertions. Strategies identified to increase contraceptive knowledge and access included increasing nurses' role in contraceptive provision and education, improving sex education in schools, and educating parents. CONCLUSIONS: Challenges remain for young women to be able to make informed choices about contraception and easily access services. More research is needed around innovative approaches to increase LARC knowledge and access, including examining the role of nurses in enhancing young women's reproductive health.


Asunto(s)
Conducta del Adolescente/psicología , Anticoncepción/estadística & datos numéricos , Anticonceptivos Femeninos/uso terapéutico , Dispositivos Intrauterinos/estadística & datos numéricos , Embarazo en Adolescencia/prevención & control , Adolescente , Australia , Consejo , Femenino , Humanos , Levonorgestrel/uso terapéutico , Embarazo , Embarazo no Planeado/psicología , Investigación Cualitativa
12.
Twin Res Hum Genet ; 18(3): 298-305, 2015 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-25851727

RESUMEN

All same-sex dizygotic (DZ) twins and approximately one-third of monozygotic (MZ) twin pairs have separate placentas, making it impossible to use the number of placentas to determine zygosity. Zygosity determination is further complicated because incorrect assumptions are often made, such as that only DZ pairs have two placentas and that all MZ pairs are phenotypically identical. These assumptions, by twins, their families and health professionals, along with the lack of universal zygosity testing for same-sex twins, has led to confusion within the twin community, yet little research has been conducted with twins about their understanding and assumptions about zygosity. We aimed to explore and quantify understanding and assumptions about zygosity using twins attending an Australian twin festival. We recruited 91 twin pairs younger than 18 years of age and their parents, and 30 adult twin pairs who were all uncertain of their zygosity, to complete one pen and paper questionnaire and one online questionnaire about their assumed zygosity, reasons for their assumptions and the importance of accurate zygosity knowledge. Responses were compared with their true zygosity measured using a genetic test. We found a substantial proportion of parents and twins had been misinformed by their own parents or medical professionals, and that knowledge of their true zygosity status provided peace of mind and positive emotional responses. For these reasons we propose universal zygosity testing of same-sex twins as early in life as possible and an increase in education of medical professionals, twins and families of twins about zygosity issues.


Asunto(s)
Actitud Frente a la Salud , Autoimagen , Gemelos Dicigóticos/psicología , Gemelos Monocigóticos/psicología , Adolescente , Adulto , Anciano , Niño , Preescolar , Estudios de Cohortes , ADN/genética , Revelación , Emociones , Conducta Exploratoria , Femenino , Genotipo , Derechos Humanos , Humanos , Lactante , Masculino , Persona de Mediana Edad , Padres/psicología , Acceso de los Pacientes a los Registros , Relaciones entre Hermanos , Gemelos Dicigóticos/genética , Gemelos Monocigóticos/genética , Victoria , Adulto Joven
13.
Genet Med ; 16(4): 294-301, 2014 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-24091800

RESUMEN

PURPOSE: Few studies have examined methods to promote communication following the return of DNA mismatch repair genetic test results obtained during research. The purpose of the present study was to evaluate a telephone protocol for returning research results of DNA mismatch repair gene testing to identify Lynch syndrome. METHODS: We invited individuals with known DNA mismatch repair mutations in their family, who were enrolled in the Colon Cancer Family Registry at the Mayo Clinic, to participate in this study. Participants completed surveys before and 6 months after DNA mismatch repair test result disclosure. RESULTS: Among 107 participants, 79% opted to learn their DNA mismatch repair test results; of these, 44 (41%) carried DNA mismatch repair mutations. After disclosure, 54% reported screening for any type of cancer. Among carriers, >74% reported communicating results to family; communication was predicted by baseline confidence in coping with the genetic test result (Z = 1.97; P = 0.04). Result disclosure to a physician was predicted by greater perceived cancer risk (Z = 2.08; P = 0.03) and greater intention to share results with family (Z = 3.07; P = 0.002). CONCLUSION: Research versus clinically based gene disclosure presents challenges. A telephone disclosure process for the return of research-based results among Lynch syndrome families led to high rates of result uptake and participant communication of results to providers and family members.


Asunto(s)
Neoplasias Colorrectales Hereditarias sin Poliposis/diagnóstico , Neoplasias Colorrectales Hereditarias sin Poliposis/psicología , Revelación , Pruebas Genéticas , Adulto , Anciano , Neoplasias Colorrectales Hereditarias sin Poliposis/genética , Femenino , Personal de Salud , Encuestas Epidemiológicas , Humanos , Masculino , Persona de Mediana Edad , Relaciones Médico-Paciente , Estudios Prospectivos , Medición de Riesgo
14.
Womens Health (Lond) ; 20: 17455057241233124, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38426387

RESUMEN

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.


Asunto(s)
Aborto Inducido , Actitud del Personal de Salud , Embarazo , Femenino , Humanos , Conciencia , Instituciones de Salud
15.
Br J Gen Pract ; 2024 Feb 19.
Artículo en Inglés | MEDLINE | ID: mdl-38373853

RESUMEN

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.

16.
Med J Aust ; 199(5): 363-6, 2013 Sep 02.
Artículo en Inglés | MEDLINE | ID: mdl-23992195

RESUMEN

Currently, there is debate about life insurance companies' use of genetic information for assessing applicants. In his early 20s, James (pseudonym) was denied full life insurance cover because he revealed that he had discussed genetic testing with a genetic counsellor. He was later tested and found to carry a mutation in the MSH6 gene; after disclosing this, he was denied cover for cancer by two other life insurance companies. Unsatisfied with the insurance companies' risk assessments, and based on his understanding that regular colonoscopy significantly reduced his risk of cancer, James made a complaint to the Australian Human Rights Commission. After informing the third insurance company that he had done so, he was offered full coverage, which suggests that the company did not have actuarial data to justify its decision. This case provides evidence of the high level of initiative and proactivity required for a consumer to achieve a fair result. Few Australians would be in a position to pursue the level of research and advocacy undertaken by James (a professional with scientific training). We call on a collaborative approach between industry, government and researchers to address the issues that James's case raises about genetic testing and life insurance.


Asunto(s)
Neoplasias Colorrectales Hereditarias sin Poliposis/genética , Predisposición Genética a la Enfermedad , Pruebas Genéticas/legislación & jurisprudencia , Selección Tendenciosa de Seguro , Seguro de Vida/legislación & jurisprudencia , Adulto , Australia , Genes BRCA2 , Humanos , Masculino , Mutación , Prejuicio
17.
Cult Health Sex ; 15(1): 85-100, 2013.
Artículo en Inglés | MEDLINE | ID: mdl-23173716

RESUMEN

Despite research suggesting that legal sex work is safe and that emotional risks and social stigma are of greater concern than health risks, much research on sex work has focused on health risks. Given the legalisation of sex work in Victoria, Australia, it is timely to look beyond health. Three focus groups were conducted with a total of 14 female sex workers on their experience of legal sex work, both positive and negative, and the social acceptability of their profession. Thematic analysis was used to identify the key ways that sex workers described sex work. Women saw legal sex work as safer than illegal sex work, but still not socially acceptable. However, they also described six contradictory elements of sex work, which was seen as: financially rewarding and entrapping; empowering and demeaning; increasing some opportunities while reducing others; flexible and demanding; offering both intimacy and competition; and leading to a 'double life'. While legalisation has improved the safety of sex work, stigma and discrimination persist.


Asunto(s)
Trabajo Sexual/legislación & jurisprudencia , Trabajo Sexual/psicología , Trabajadores Sexuales/psicología , Adulto , Femenino , Grupos Focales , Humanos , Satisfacción en el Trabajo , Satisfacción Personal , Victoria
18.
Womens Health (Lond) ; 19: 17455057231152373, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-36785871

RESUMEN

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.


Asunto(s)
Aborto Inducido , Actitud del Personal de Salud , Embarazo , Femenino , Humanos , Negativa al Tratamiento , Conciencia , Sudáfrica
19.
Public Health Res Pract ; 33(2)2023 Jul 05.
Artículo en Inglés | MEDLINE | ID: mdl-36065020

RESUMEN

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.


Asunto(s)
Detección Precoz del Cáncer , Neoplasias , Humanos , Femenino , Adulto Joven , Adulto , Persona de Mediana Edad , Anciano , Masculino , Australia , Neoplasias/diagnóstico , Investigación Cualitativa , Personal de Salud/educación
20.
PLoS One ; 18(12): e0287591, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-38091281

RESUMEN

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.


Asunto(s)
Melanoma , Humanos , Melanoma/diagnóstico , Melanoma/prevención & control , Costos de la Atención en Salud , Personal de Salud , Emociones , Tamizaje Masivo , Investigación Cualitativa
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