Volume 215 Issue 8

Acknowledging the loss can go a long way towards healing the complex grief related to ectopic pregnancies

Sarah Saunders

We need to talk about miscarriage, to provide sensitive, patient-centred, evidence-based continuity of care

Melanie Keep

A 3-month-old boy was admitted with clinical sepsis, hepatosplenomegaly, severe anaemia, transaminitis, high lactate, and coagulopathy

Mandy X Wu · Aoife Moore · Mandy Seel · Sumi Britton · Judith Dean · Janet Sharpe · Garry Inglis · Clare B Nourse

Self-collection will facilitate new community-led, co-designed delivery models that could greatly increase the acceptability and uptake of screening

Karen Canfell · Megan A Smith · Deborah J Bateson

Identifying inequity of access and assessing the effectiveness of interventions is difficult without systematic abortion data collection

Caroline M Costa · Kirsten I Black

Powerful new automated tools are being developed to identify the women most likely to have an existing or future cancer

John L Hopper · Tuong Linh Nguyen

Community-based health services would ensure that appropriate care is available to some of our most vulnerable patients

Danielle Mazza

Objectives: To evaluate the implementation and acceptability of the self‐collection cervical screening pathway since commencement of the renewed National Cervical Screening Program (rNCSP), from the perspectives of screening participants and primary care practitioners. Design, setting, participants: Qualitative study; individual semi‐structured interviews with 45 screening participants and 18 primary care practitioners in Victoria who had engaged with the self‐collection pathway during the first 17 months of the rNCSP (1 December 2017 ‒ 30 April 2019). Results: The self‐collection pathway was highly acceptable as an alternative cervical screening pathway for most participating screening participants and practitioners. Some screening participants indicated that they would not have been screened had the pathway not been available. Acceptability was lower among those who had tested positive for HPV types not 16/18, a result that requires additional testing of a clinician‐collected cervical sample. Use of the self‐collection pathway is driven more by practitioners than their patients. Interpretations of the self‐collection guidelines varied between practices. Barriers to expanding promotion of the pathway by practitioners included difficulties with identifying eligible participants. Conclusions: Increasing the accessibility of the self‐collection pathway to under‐ and never screened women could reduce inequities in cervical cancer outcomes for those not participating in the main screening pathway. Practitioners should be provided resources to integrate self‐collection into routine practice and to efficiently implement the entire self‐collection pathway, in order to maximise its use and to optimise the experience for screening participants.

Nicola S Creagh · Claire Zammit · Julia ML Brotherton · Marion Saville · Tracey McDermott · Claire Nightingale · Margaret Kelaher

The age-specific impact of risk factors on breast cancer detection could inform discussions of risk-stratified screening

Naomi Noguchi · Michael L Marinovich · Elizabeth J Wylie · Helen G Lund · Nehmat Houssami

General practitioners should be supported to enable them to provide early medical abortion services

Asvini K Subasinghe · Kevin McGeechan · Jessica E Moulton · Luke E Grzeskowiak · Danielle Mazza

Removing MBS rebate restrictions for telehealth consultations would enhance sexual and reproductive health services access

Yan Cheng · Clare Boerma · Lucy Peck · Jessica R Botfield · Jane Estoesta · Kevin McGeechan

Public health information should be easily accessible to the general population

Olivia A Mac · Danielle M Muscat · Julie Ayre · Pinika Patel · Kirsten J McCaffery

The surgical abortion rate has declined 5.1% per year since the PBS listing of mifepristone/misoprostol

Louise A Keogh · Lyle C Gurrin · Patricia Moore

Rectal bleeding is common in pregnancy, with a reported prevalence of 10–43%

Ralley Prentice · Aysha Al‐Ani · Tiffany Cherry · Julia Dixon‐Douglas · Jade Eccles‐Smith · Julia Matheson · Jeanne Tie · Iniyaval Thevathasan · Jacob J McCormick · Britt Christensen

To the Editor: Australia is home to the oldest continuing cultures on Earth. Yet, rather than being treasured as a source of national pride, Aboriginal and Torres Strait Islander knowledges remain mostly unappreciated and, at times, actively silenced (eg, Uluru Statement).1 Passed down through generations, these valuable, continually changing knowledge systems are core to our adaptability, strength and survival against extreme adversity including colonisation. Persistent health disparities between Indigenous and other Australians signal the ineffectiveness of allegedly well intentioned policy and research that have largely produced deficit‐focused research, describing the extent of the Aboriginal and Torres Strait Islander problem rather than being driven by the priorities and solutions of Aboriginal and Torres Strait Islander communities. Institutions are now acknowledging that to close the gap in health disparities, “Aboriginal and Torres Strait Islander people must determine, drive and own the desired outcomes”.2 Gradual transformation in research governance and methodologies has occurred through ethics protocols and quality appraisal tools3 guiding the positioning of Aboriginal and Torres Strait Islander people as leaders and drivers of strengths‐based, benefit‐led research processes.4 Aboriginal and Torres Strait Islander researchers are more often leading the way in key health system domains, such as research ethics, education and effective community‐based research, but there is currently no systematic way of identifying our scholarship in the peer‐reviewed literature. How do we, as Aboriginal and Torres Strait Islander people, know who is representing, and speaking for, us? We assert the need to develop strategies to rectify and improve transparency of Indigenous health research. The first steps could be: inclusion of searchable tags for Indigenous authorship and contributorship (acknowledging non‐written contributions); for example, through extension of the Contributor Roles Taxonomy (CRediT), which is integrated into the Open Researcher and Contributor ID (ORCID; www.orcid.org) and used in over 120 journals;5 and expansion of contributor statements outlining diversity of roles and the positionality of our non‐Indigenous allies within the research. This would enhance the ability to efficiently distinguish Aboriginal and Torres Strait Islander scholarship, increasing the visibility of our knowledges and perspectives in research and translation, thereby improving the transparency of academic literature to guide decisions about our health and wellbeing. We seek the MJA’s leadership in “foregrounding Indigenous sovereignty”6 by advocating and appropriately acknowledging our contribution in health research.

Janine Mohamed · Veronica Matthews · Roxanne Bainbridge · Megan Williams

To the Editor: Thomas and colleagues1 describe the ethical complexities that can arise in the use of non‐invasive prenatal testing (NIPT) based on the detection of cell‐free fetal DNA in the maternal circulation to screen for chromosomal and other genetic fetal conditions, especially if the clinical utility and implications of the testing are not well understood and explained. They indicate that “the current NIPT tests available are for specific chromosomal aneuploidy, extended panels of targeted conditions and low resolution whole genome sequencing”. We support that all tests (for screening or diagnosis, and not just genetic tests) should be explained. However, we remind readers that there are specific tests using NIPT of cell‐free fetal DNA that have strong potential to benefit women and their fetuses and are at very low risk of the ethical hazards that concern Thomas and colleagues. A lead example is testing in women who are RhD (antigen) negative to predict whether the fetus is RHD (genotype) positive. Such testing can establish with a high level of certainty whether the fetus is RHD negative, in which case the woman can be spared the need for antenatal RhD immunoprophylaxis to prevent alloimmunisation. This approach not only spares around a third of women who are RhD‐negative the need for immunoprophylaxis but may also help reduce the burden on a small and altruistic pool of RhD immunoglobulin donors.2,3 In RhD‐negative women with preformed RhD antibodies, similar testing can be used to determine whether or not there is a need for intensive surveillance during the pregnancy for haemolytic disease of the fetus and newborn. To consider all tests that use NIPT based on cell‐free fetal DNA as carrying the same complexity of explanation and ethical risk would resemble a conclusion that all immunochemistry is ethically risky because of the difficulties of explaining and interpreting prostate‐specific antigen tests, or that all fetal ultrasound is unethical because in some countries it is used inappropriately for sex selection. We encourage readers to consider that the underlying reason and specific target for each test, much more than the platform on which it is run, determines the level of ethical complexity.

Helen G Liley · Michael J Peek · James Daly

To the Editor: The scope of genetic testing has advanced exponentially in the past 5–10 years and conversations between patients and clinicians are becoming more nuanced. This highlights the value of genetic professionals who are skilled at ensuring patients’ understanding of genetic testing to satisfy the legal requirements for consent.1,2 Other complexities in the setting of prenatal testing include finding of variants of uncertain significance, variable penetrance or expressivity associated with most genetic conditions, and potential future treatments for adult‐onset conditions uncovered by testing. Thomas and colleagues3 referred to power imbalance between a doctor and a patient as a factor that could ethically undermine consent for non‐invasive prenatal screening (NIPS). However, this power imbalance exists across all facets of medicine. Patients today are more medically savvy owing to easy access to information technology, thus reducing the knowledge gap (and the power imbalance). A doctor’s duty of care is to provide accurate and appropriate information that is understood by the patient in order to make a valid consent.2 There is no alternative to a valid consent for NIPS than one that is built upon an “I and thou” doctor–patient relationship.4 This relationship is a dynamic and shared experience, focusing not on the knowledge but on supporting expectant parents in making value‐consistent decisions.5 Uncertainties are not unique to NIPS; perinatal uncertainties are not new to either genetics or medicine, which can arise when a diagnosis is not made as well as when a diagnosis is made. Another ethical concern regarding NIPS is access and equity. As there is no Medicare funding for NIPS, should genetic disorders be screened out by the rich, would genetic conditions become the disease of the poor? This has implications for the society as a whole. Is there a duty to have a healthy child versus should we value diversity and disability? Would there be less social or medical support should society become less tolerant of individuals with disability? Genetics and other areas of medicine are evolving rapidly; nevertheless, the shared ethical considerations, including valid consent, uncertainty, and access equity, have remained to shape the moral principles of our society in this genomics era.

Alison McLean · Kathy Wu

In reply

Joseph Thomas · James Harraway · David Kirchhoffer