In this essay, I argue that the way American bioethics has traditionally conceived of the distinction between public and private has given rise to some ethically problematic blind spots in its analyses to date. Furthermore, I argue that bioethics's view of the public and private spheres has reinforced a shortsighted view of bioethics's analytical sphere of influence. In particular, it has led bioethics to conceptualize issues largely from the perspective of health professionals, eschewing analyses of the problems of health and health information that patients and their intimates face outside of professional relationships and traditional health-care settings. It has also led some bioethical analyses to reflect, and to some degree reinforce, relationships of power that they might instead challenge.
Candidate evaluation for breast implantation presents a more important obstacle to the fulfillment of the normative requirements of informed consent than do the social roles of women or cultural norms governing female beauty. I argue that women's decisions to receive breast implants may indeed be informed, competently made, and substantially voluntary, but that the cultural construction of beauty may undermine women's autonomy by influencing the evaluation of surgical candidates and risk disclosure during informed consent.
OBJECTIVES: To describe and quantify disclosed payments from the pharmaceutical industry to the healthcare sector, and to examine the impact of the 2015 changes to Australia's self-regulated system of transparency. DESIGN: Observational database study. SETTING: Australia. PARTICIPANTS: Publicly available reports submitted by members of Australian pharmaceutical industry trade organisations, Medicines Australia and the Generic and Biosimilar Medicines Association (GBMA) (October 2011–December 2017). EXPOSURE: Changes to transparency reporting requirements with the updates of pharmaceutical industry Codes of Conduct in 2015. MAIN OUTCOME MEASURES: Elements of healthcare sector spending that members of industry organisations are required to publicly disclose; cumulative amount of disclosed spending (monthly average) in the year prior to and following the revision. RESULTS: There was a 34.1% reduction in disclosed spending from Medicines Australia member companies in the year after the 2015 changes to the Code of Conduct were introduced ($A89 658 566 in the preceding year, October 2014–September 2015; $A59 052 551 in the following year). The new Code allowed for reduced reporting of spending on food and beverages at events and for sponsored healthcare professionals. However, there was enhanced transparency around identification of individual health professionals receiving payments. GBMA member reporting totalled $A2 580 402 in the year prior to the revision, then ceased. CONCLUSIONS: This study shows the limitations of a self-regulatory system around industry disclosure of spending. We advocate for robust regulatory systems, such as legislation, to promote mandatory long-lasting public transparency.
Abstract Background The purpose of this study was to identify how the topic of overdiagnosis in breast cancer screening is framed by experts and to clarify differences and similarities within these frames in terms of problems, causes, values and solutions. Methods We used a qualitative methodology using interviews with breast screening experts across Australia and applying framing theory to map and analyse their views about overdiagnosis. We interviewed 33 breast screening experts who influence the public and/or policy makers via one or more of: public or academic commentary; senior service management; government advisory bodies; professional committees; non-government/consumer organisations. Experts were currently or previously working in breast screening in a variety of roles including clinical practice, research, service provision and policy, consumer representation and advocacy. Results Each expert used one or more of six frames to conceptualise overdiagnosis in breast screening. Frames are described as: Overdiagnosis is harming women; Stop squabbling in public; Don't hide the problem from women; We need to know the overdiagnosis rate; Balancing harms and benefits is a personal matter; and The problem is overtreatment. Each frame contains a different but internally coherent account of what the problem is, the causes and solutions, and a moral evaluation. Some of the frames are at least partly commensurable with each other; others are strongly incommensurable. Conclusions Experts have very different ways of framing overdiagnosis in breast screening. This variation may contribute to the ongoing controversy in this topic. The concept of experts using different frames when thinking and talking about overdiagnosis might be a useful tool for those who are trying to negotiate the complexity of expert disagreement in order to participate in decisions about screening.
OBJECTIVES: To study the experiences and views within the health science community regarding the spread and prevention of science misinformation within and beyond the setting of the COVID-19 pandemic. METHODS: An exploratory study with an empirical ethics approach using qualitative interviews with Australians who produce, communicate and study health science research. RESULTS: Key elements that participants considered might facilitate misinformation included: the production of low-quality, fraudulent or biased science research; inadequate public access to high-quality research; insufficient public reading of high-quality research. Strategies to reduce or prevent misinformation could come from within the academic community, academic and lay media publishing systems, government funders and educators of the general public. Recommended solutions from within the scientific community included: rewarding research translation, encouraging standardised study design, increasing use of automated quality assessment tools, mandating study protocol registration, transparent peer review, facilitating wider use of open access and use of newer technologies to target public audiences. There was disagreement over whether preprints were part of the problem or part of the solution. CONCLUSIONS: There is concern from within the health science community about systemic failings that might facilitate the production and spread of false or misleading science information. We advocate for further research into ways to minimise the production and spread of misinformation about COVID-19 and other science crises in the future.
<b><i>Introduction:</i></b> Many research programs are challenged to accommodate low-resource research participants' (LRRP) ancillary care needs when returning genomic research results. We define LRRP as those who are low income, uninsured, underinsured, or facing barriers to act upon the results returned. This study evaluates current policies and practices surrounding return of results (RoR) to LRRP, as well as the attitudes of investigators toward providing ancillary care to LRRP. <b><i>Methods:</i></b> A semi-structured interview study was conducted with representatives of 35 genomic research programs nationwide. Eligible programs were returning, or planning to return, medically actionable genomic results to participants. <b><i>Results:</i></b> Three content categories emerged from this study, including: (1) RoR structures, (2) barriers to RoR to LRRP, and (3) solutions to meet community and LRRP needs. Three major structures of RoR emerged: (1) RoR Embedded in Clinical Care, (2) RoR Independent of Clinical Care, and (3) Reliance on Clinical Partnerships to Facilitate RoR. Inadequacy of program resources to address the needs of LRRP was commonly considered a significant obstacle. The attitudes and views of informants regarding responsibility to provide ancillary care for LRRP receiving genomic results were highly varied. Some informants believed that genomic sequencing and testing was not a priority for LRRP because of other pressing issues in their lives, such as housing and food insecurity. Research programs differ regarding whether clinical and social support for LRRP is considered within the purview of the research team. Some programs instituted accommodations for LRRP, including social work referral and insurance enrollment assistance. <b><i>Conclusion:</i></b> Support to access downstream treatment is not readily available for LRRP in many genomic research programs. Development of best practices and policies for managing RoR to LRRP is needed.
Considerations of justice and concern for well-being support conducting mental health research and addressing ethical concerns specific to mental health research are critical. We discuss these concerns, provide recommendations to enable the ethical conduct of mental health research, and argue that participants' interests should be given primary weight in resolving apparent dilemmas. We also comment on provisions of two legislative actions in India relevant to mental health research: Rights of Persons with Disability Act 2016 and the Mental Health Care Act 2017. Both conform to the 2006 United Nations Convention on Rights of Persons with Disabilities of which India is a signatory. Both provide protections and enumerate rights relevant to people with mental health conditions but with differing focus. The commonalities and differences between the three are discussed in the background of international literature on research in mental health conditions. Studies involving deception and future directions for ethical requirements regarding genetic research are discussed.
In: Journal of HIV/AIDS & social services: research, practice, and policy adopted by the National Social Work AIDS Network (NSWAN), Band 12, Heft 3-4, S. 294-313
BACKGROUND: Reducing the transmission of severe acute respiratory syndrome coronavirus 2 (SARS‐CoV‐2) is a global priority. Contact tracing identifies people who were recently in contact with an infected individual, in order to isolate them and reduce further transmission. Digital technology could be implemented to augment and accelerate manual contact tracing. Digital tools for contact tracing may be grouped into three areas: 1) outbreak response; 2) proximity tracing; and 3) symptom tracking. We conducted a rapid review on the effectiveness of digital solutions to contact tracing during infectious disease outbreaks. OBJECTIVES: To assess the benefits, harms, and acceptability of personal digital contact tracing solutions for identifying contacts of an identified positive case of an infectious disease. SEARCH METHODS: An information specialist searched the literature from 1 January 2000 to 5 May 2020 in CENTRAL, MEDLINE, and Embase. Additionally, we screened the Cochrane COVID‐19 Study Register. SELECTION CRITERIA: We included randomised controlled trials (RCTs), cluster‐RCTs, quasi‐RCTs, cohort studies, cross‐sectional studies and modelling studies, in general populations. We preferentially included studies of contact tracing during infectious disease outbreaks (including COVID‐19, Ebola, tuberculosis, severe acute respiratory syndrome virus, and Middle East respiratory syndrome) as direct evidence, but considered comparative studies of contact tracing outside an outbreak as indirect evidence. The digital solutions varied but typically included software (or firmware) for users to install on their devices or to be uploaded to devices provided by governments or third parties. Control measures included traditional or manual contact tracing, self‐reported diaries and surveys, interviews, other standard methods for determining close contacts, and other technologies compared to digital solutions (e.g. electronic medical records). DATA COLLECTION AND ANALYSIS: Two review authors independently screened records and all ...
Commentators are concerned that broad consent may not provide biospecimen donors with sufficient information regarding possible future research uses of their tissue. We surveyed with interviews 302 cancer patients who had recently provided broad consent at four diverse academic medical centers. The majority of donors believed that the consent form provided them with sufficient information regarding future possible uses of their biospecimens. Donors expressed very positive views regarding tissue donation in general and endorsed the use of their biospecimens in future research across a wide range of contexts. Concerns regarding future uses were limited to for-profit research and research by investigators in other countries. These results support the use of broad consent to store and use biological samples in future research.