The regulation of genomic data sharing in Australia is a confusing mix of common law, legislation, ethical guidelines, and codes of practice. Beyond privacy laws, which only apply to genomic data that meets the definition of personal information, the key regulatory lever is the National Health and Medical Research Council (NHMRC) National Statement for Ethical Conduct in Human Research (“National Statement”) (2007). Compliance with the National Statement is a requirement for institutions to apply to the NHMRC for funding, and includes—among other things—requirements for review of most genomic research by Human Research Ethics Committees. The sections of the National Statement specifying requirements for research with human genomic data are currently under review, including proposed new requirements addressing the return of genetic research findings and oversight of transfer agreements. Ensuring the willingness of Australians to donate their genomic information and participate in medical research will require clarification and harmonisation of the applicable regulatory framework, along with reforms to ensure that these regulations reflect the conditions necessary to promote ongoing public trust in researchers and institutions.
ObjectivesTo investigate barriers to and facilitators of access to voluntary assisted dying in Victoria under the Voluntary Assisted Dying Act 2017 (Vic).Design, setting, participantsQualitative study; semi‐structured interviews with people who had applied for voluntary assisted dying or their family caregivers, recruited via social media and interested advocacy groups; interviews conducted 17 August – 26 November 2021.Main outcome measuresBarriers to and facilitators of access to voluntary assisted dying.ResultsWe interviewed 33 participants about 28 people who had applied for voluntary assisted dying; all but one of the interviews were with family caregivers after their relatives’ deaths, and all but three were conducted via Zoom. The major barriers to access identified by participants were finding trained and willing doctors to assess eligibility for voluntary assisted dying; the time required for the application process (especially given how ill the applicants were); the prohibition of telehealth consultations; institutional objections to voluntary assisted dying; and the prohibition of health practitioners raising voluntary assisted dying with their patients. The major facilitators mentioned were care navigators (both the Statewide service and local navigators); finding a supportive coordinating practitioner; the Statewide Pharmacy Service; and system flow once the process had been initiated (although not during the early days of voluntary assisted dying in Victoria). Access was particularly difficult for people in regional areas or with neurodegenerative conditions.ConclusionsAccess to voluntary assisted dying has improved in Victoria, and people generally felt supported while navigating the application process once they found a coordinating practitioner or a navigator. But this step, and other barriers, often still made patient access difficult. Adequate support for doctors, navigators and other facilitators of access is vital for the effective functioning of the overall process.
Persons with cognitive impairment(s) are overrepresented in the criminal justice system (CJS) yet many instances of cognitive impairment go undiagnosed. As this article outlines, it would be both desirable and feasible to use automated alerts to flag accused persons who may require assistance in interacting with the CJS either due to a confirmed or likely diagnosis of a cognitive impairment or other relevant condition. A proposed method to develop this alert system is outlined, combining Natural Language Processing (NLP) applied to Electronic Health Records (EHRs) with data linkage (DL) of health and CJS data. Although there are technical barriers, this article focuses on the ethical and legal barriers of this proposed approach. It is concluded that the overall benefits of the proposed alert system would likely outweigh potential adverse outcomes. It is argued that a waiver of consent would be appropriate and that legal barriers, in terms of privacy legislation at both Federal and State levels, which apply varying requirements for the disclosure of personal information, may be overcome in part through de-identification strategies. The examples provided in this paper of criminological data linkage projects support the feasibility of the method proposed.
This article was inadvertently published under a draft title.
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