08 March 2019

Health Research

‘PhD thesis opposing immunisation: Failure of academic rigour with real-world consequences’ by Kerrie Wiley, Julie Leask, Margaret Burgess and Peter McIntyre in (2019) 37(12) Vaccine 1541 offers an elegant, important and alas necessary appraisal of the University of Wollongong doctorate by an anti-vaccination advocate.

The authors conclude
It might be argued that a thesis on immunisation policy conferred through a Faculty of Law, Humanities and the Arts is not expected to present a detailed and systematic literature review or undertake primary research. We argue that a thesis which explicitly sets out to examine “Government vaccination policies, including an assessment of the underpinning scientific evidence and the stakeholders who have influence in the decision-making process” (pp2), irrespective of the faculty or discipline in which it is conducted, should use methods for identifying and assessing scientific evidence of comparable rigour to those used by the academic and scientific bodies which inform policy makers. 
This thesis is notable for its lack of evidence of systematic literature review. Despite its extensive claims, there is no primary research, but there is abundant evidence of strong bias in selecting the literature cited and sometimes outright misrepresentation of facts. We agree that critique of immunisation policy is a valid academic exercise that goes beyond technical knowledge, but equally it cannot be based on incomplete, flawed technical assertions. 
The thesis legitimately highlights the importance of transparency and accessibility in the processes by which vaccines are assessed for inclusion on any national immunisation schedule. It also raises the importance of perceptions about conflicts of interest among contributors to immunisation policy development, and the need for open conversation about policy decisions among all immunisation stakeholders, including the public. These considerations are important for countries seeking to improve established National Immunisation Technical Advisory Groups (NITAGs), as noted by the Supporting Independent Vaccine Advisory Committee (SIVAC) initiative. Areas of public health importance such as immunisation are legitimate topics for scrutiny. It is important to question long-embedded policies and practices, however such scrutiny must be rigorous, disciplined, and draw on the full range of appropriate expertise. 
Almost three years after the event, the award of PhD by a reputable University has validated the thesis’ claims and allowed the author to add weight to her subsequent prolific writings, including open letters to politicians, and seminars to parents, with consequences on a national and international scale. Tangible evidence of real-world consequences come from two sources. First, two of us (KW and JL), in our research with non-vaccinating Australian parents, find some who state that material in this PhD and its endorsement by a recognised university supports their decision not to vaccinate their children. Second, the author of the thesis has put herself forward as an expert witness in legal proceedings where parents are in dispute over the need for their children’s immunisation by positioning her status as a PhD graduate to assert expert status. 
Those looking for balanced information about immunisation deserve a balanced critique of this thesis to aid them in their decision-making. We believe that our critique serves as an accessible, objective and fair appraisal of the thesis, allowing valid assessment of the quality of the information it presents and the credentials of its author, within the limitations and framework of a journal article.

07 March 2019

Dodgy Doctors

'Phantom practitioners: accreditation fraud, corruption and health professionals' by Bruce Baer Arnold and Wendy Bonython in (2019) 27(1) Australian Health Law Bulletin 14 comments
The Independent Commission Against Corruption (ICAC) report on Eman Sharobeem and action against Raffaele Di Paolo, Vitomir Zepinic, Vincent Berg, Dusan Milosevic and Balaji Varatharaju, and raise ques- tions about misrepresentation by people who hold themselves out as health practitioners but are unregistered, and in some instances have used fake documentation to obfuscate their lack of training. 
The authors argue that
It is axiomatic that trust is a foundation of the Australian health system: trust in the competence and ethical behaviour of health professionals alongside trust in the efficacy of regulatory bodies such as the Austra- lian Health Practitioner Regulation Agency (AHPRA), courts, tribunals and professional boards that identify and respond to misbehaviour. That trust is eroded by people who successfully hold themselves out — in essence make unsubstantiated claims — to be entitled to engage in professional practice. 
Those claims may have an entirely fictive basis, with for example an individual falsely claiming that they received training from an accredited institution, passed tests of competence and duly received certification by an educational institution and/or a professional body. Claims may instead involve an individual who did indeed receive the required training and pass the corresponding tests but subsequently was either deregistered and unable to lawfully engage in professional practice or whose practice was restricted, for example through a requirement that the professional not deal with patients unless closely supervised by a peer. 
A recent report by the NSW ICAC explores one instance of a “phantom” practitioner: a high-profile individual, in a position where trust was particularly important, who invented professional qualifications, gained financial and social benefit from that identity crime and resisted investigation.  The report highlights questions about corruption rather than merely appropriation of a status to which the supposed practitioner was not entitled. It offers a perspective on recent prosecutions of several fake general practitioners and specialists, alongside action by regulators.

06 March 2019

Suppression

The NSW Law Reform Commission is consulting about terms of reference for its inquiry into Court and tribunal information: access, disclosure and publication.

The Terms are
the NSW Law Reform Commission is to review and report on the operation of: legislative prohibitions on the disclosure or publication of NSW court and tribunal information, NSW court suppression and non-publication orders, and tribunal orders restricting disclosure of information, and access to information in NSW courts and tribunals.  
In particular, the Commission is to consider:
a) Any NSW legislation that affects access to, and disclosure and publication of, court and tribunal information, including: The Court Suppression and Non-Publication Orders Act 2010 (NSW); The Court Information Act 2010 (NSW); and The Children (Criminal Proceedings) Act 1987.  
b) Whether the current arrangements strike the right balance between the proper administration of justice, the rights of victims and witnesses, privacy, confidentiality, public safety, the right to a fair trial, national security, commercial/business interests, and the public interest in open justice.   
c) The effectiveness of current enforcement provisions in achieving the right balance, including appeal rights.  
d) The appropriateness of legislative provisions prohibiting the identification of children and young people involved in civil and criminal proceedings, including prohibitions on the identification of adults convicted of offences committed as children and on the identification of deceased children associated with criminal proceedings.  
e) Whether, and to what extent, suppression and non-publication orders can remain effective in the digital environment, and whether there are any appropriate alternatives.  
f) The impact of any information access regime on the operation of NSW courts and tribunals.  
g) Whether, and to what extent, technology can be used to facilitate access to court and tribunal information.  
h) The findings of the Royal Commission into Institutional Responses to Child Sexual Abuse regarding the public interest in exposing child sexual abuse offending.  
i) Comparable legal and practical arrangements elsewhere in Australia and overseas.  
j) Any other relevant matters.

04 March 2019

DTC

“I would rather have it done by a doctor”— laypeople’s perceptions of direct-to-consumer genetic testing (DTC GT) and its ethical implications' by Manuel Schaper, Sabine W√∂hlke and Silke Schicktanz in (2018) 22(3) Medicine Health Care and Philosophy 1-10 comments 
Direct-to-consumer genetic testing (DTC GT) has been available for several years now, with varying degrees of regulation across different countries. Despite a restrictive legal framework it is possible for consumers to order genetic tests from companies located in other countries. However, German laypeople’s awareness and perceptions of DTC GT services is still unexplored. We conducted seven focus groups (participants n = 43) with German laypeople to explore their perceptions of and attitudes towards commercial genetic testing and its ethical implications. Participants were critical towards DTC GT. Criticism was directed at health-related, predictive testing, while lifestyle tests were accepted and even welcomed to some extent. Participants expressed strong reservations regarding commercial provision of genetic diagnostics and expressed a lack of trust in respective companies. They preferred non-commercial distribution within the public healthcare system. Participants also expressed high expectations of physicians’ abilities to interpret information obtained via DTC GT companies and provide counseling. Legal restrictions on commercial distribution of genetic tests were opposed, with participants arguing that it should be available to consumers. DTC GT companies are not perceived as trustworthy when compared to the public healthcare system and its professional ethical standards and practices. Laypeople rated general consumer autonomy higher than their own concerns, thus recommending against strong legal regulation. We conclude that medicine’s trustworthiness may be negatively affected if commercial provision is not visibly opposed by the medical professions, while DTC GT companies may gain in trustworthiness if they adapt to standards and practices upheld in medicine.