Discovery Health, one of the leading healthcare funders in South Africa (SA), will offer genetic testing to its members for USD250 (approximately ZAR3 400) per test from 2016. On the surface, this ...appears to be innovative and futuristic. However, a deeper look at this announcement reveals considerable problems in the exportation of biological samples and data out of SA, and brings into sharp focus the lack of protection in place for potential donors. In return for a reduced-cost genetic test, which will nevertheless be billed to a member's savings plan, data from the patient's results, and probably the sample itself, will be sent to the USA for storage, research purposes and possible commercial use, with no further benefit for the patient. This development has demonstrated the need for more stringent protection of the movement of biological samples and data out of SA, particularly with reference to consenting procedures, material transfer agreements, and the export of biological data themselves.
The use of medical stimulants to sustain attention, augment memory and enhance intellectual capacity is increasing in society. The use of Methylphenidate for cognitive enhancement is a subject that ...has received much attention in the literature and academic circles in recent times globally. Medical doctors and medical students appear to be equally involved in the off-label use of Methylphenidate. This presents a potential harm to society and the individual as the long-term side effect profile of this medication is unknown.
The implication of the use of Methylphenidate by medical students and doctors has not been fully explored. This article considers the impact of this use on the traditional role of medicine, society, the patient and suggests a way forward. We discuss the salient philosophy surrounding the use of cognitive enhancement. We query whether there are cognitive benefits to the use of Methylphenidate in healthy students and doctors and whether these benefits would outweigh the risks in taking the medication. Could these benefits lead to tangible outcomes for society and could the off label-use of Methylphenidate potentially undermine the medical profession and the treatment of patients? If cognitive benefits are proven then doctors may be coerced explicitly or implicitly to use the drug which may undermine their autonomy. The increased appeal of cognitive enhancement challenges the traditional role of medicine in society, and calls into question the role of a virtuous life as a contributing factor for achievement. In countries with vast economic disparity such as South Africa an enhancement of personal utility that can be bought may lead to greater inequities.
Under the status quo the distribution of methylphenidate is unjust. Regulatory governmental policy must seek to remedy this while minimising the potential for competitive advantage for the enhanced. Public debate on the use of cognitive enhancement is long overdue and must be stimulated. The use of Methylphenidate for cognitive enhancement is philosophically defendable if long-term research can prove that the risks are negligible and the outcomes tangible.
As Easy as A, B and C Staunton, Ciara
European journal of health law
18, Issue:
2
Journal Article
Peer reviewed
This article examines the development of Ireland’s abortion policy from 1861 to the present day. It explores the reasoning for this policy as well as the inherent problems with this policy. It ...examines in detail the A, B and C v. Ireland judgement and its impact, (if any) on Irish abortion law. Finally, it discusses the margin of appreciation doctrine used by the European Court of Human Rights in deciding cases of a moral nature.
Background
After years of government inaction, Ireland’s first National Strategy for Accelerating Genetics and Genomic Medicine in Ireland was launched in December 2022. Research, innovation, and ...robust governance are identified as key to supporting a genomic service. It is critical that any policies developed to support the implementation of this strategy are informed in part by the views of the Irish public. The aim of this research is to explore the perspectives of the Irish public on the use of their genetic data for research.
Methods
The “Your DNA Your Say” project is a global exploratory project that is gathering public attitudes towards genomic data sharing. Between March and April 2022, 1005 members of the Irish public were anonymously surveyed to determine their views on the use of their genetic data and health data for research.
Results
Less than half of respondents were familiar with DNA, genetics, and genomics. There was a feeling that DNA and medical information should receive high levels of protection. Amongst the categories to whom the participants could share data, there are high levels of trust in the medical profession, and highest levels of willingness to share data with the medical profession. There were low levels of willingness for a separate individual or entity to decide on access. Overall, there is a consistent level of uncertainty with many respondents selecting “I do not know”, perhaps indicating the need for more information in this area.
Conclusion
It is critical that the Genomic Strategic builds upon the willingness to donate and provides ongoing and sustained funding to ensure trust of the Irish public in genomic research.
Abstract
The Protection of Personal Information Act (POPIA) No.4 of 2013 is the first comprehensive data protection regulation to be passed in South Africa and it gives effect to the right to ...informational privacy derived from the constitutional right to privacy
It is due to come into force in 2020, and seeks to regulate the processing of personal information in South Africa, regulate the flow of personal information across South Africa’s borders, and ensure that any limitations on the right to privacy are justified and aimed at protecting other important rights and interests.
Although it was not drafted with health research in mind, POPIA will have an impact on the sharing of health data for research, in particular biorepositories.
It is now timely to consider the impact of POPIA on biorepositories, and the necessary changes to their access and sharing arrangements prior to POPIA coming into force.
A moral gap? Staunton, Ciara
Ethical and legal debates in Irish healthcare,
02/2016
Book Chapter
Developments in human biotechnology have created new ethical concerns. Just as the early years of organ transplant technology brought about a change in our concept of death, developments in ...embryology are challenging our concept of what constitutes life. Progress in medical science has now made it possible not only to create an embryo in a laboratory, but to destroy that same embryo in the course of medical research. While there is great potential for advancement in regenerative medicine, the fact that the embryo must be destroyed has resulted in embryonic stem cell research (ESCR) being described as the most contentious
The ethical concerns associated with HIV prevention and treatment research have been widely explored in South Africa over the past 3 decades. However, HIV cure research is relatively new to the ...region and significant ethical and social challenges are anticipated. There has been no published empirical enquiry in Africa into key informant perspectives on HIV cure research. Consequently, this study was conducted to gain preliminary data from South African HIV clinicians, researchers and activists.
In-depth interviews were conducted on a purposive sample of fourteen key informants in South Africa. Audiotaped interviews were transcribed verbatim with concurrent thematic analysis. The perspectives of HIV clinicians, researchers and activists were captured. Analyst triangulation occurred as the data were analysed by three authors independently.
The rapid evolution of HIV cure research agendas was prominent with participants expressing some concern that the global North was driving the cure agenda. Participants described a symbiotic relationship between cure, treatment and prevention research necessitating collaboration. Assessing and managing knowledge and expectations around HIV cure research emerged as a central theme related to challenges to constructing 'cure' - how patients understand the idea of cure is important in explaining the complexity of cure research especially in the South African context where understanding of science is often challenging. Managing expectations and avoiding curative misconception will have implications for consent processes. Unique strategies in cure research could include treatment interruption, which has the potential to create therapeutic and ethical conflict and will be perceived as a significant risk. Ethical challenges in cure research will impact on informed consent and community engagement.
It was encouraging to note the desire for synergy amongst researchers and clinicians working in the fields of prevention, treatment and cure. Translation of complex HIV cure science into lay language is critical. Moving forward, RECs must be adequately constituted with scientific expertise and community representation when reviewing cure protocols. It is hoped that knowledge and resource sharing in the context of collaboration between research scientists working in cure and those working in treatment and prevention will accelerate progress towards cure.
To the Editor: The Protection of Personal Information Act 4 of 20131 (POPIA) was enacted by the South African (SA) parliament in 2013 after a long process of public consultation. To allow all sectors ...of SA society sufficient time to prepare to be compliant with POPIA, the SA government deferred the entering into force of the substantive provisions of POPIA for several years. Throughout this hiatus period, POPIA was widely publicised in the SA media, as is evident from any internet search.
The Guilty Knowledge Test (GKT) is a psychophysiological questioning technique that can be used as part of a polygraph examination which purports to assess whether suspects conceal "guilty knowledge" ...by measuring their physiological responses while responding to a series of multiple choice questions. The present study sets out to consider a number of key issues in relation to the GKT paradigm. Specifically, the following questions were considered: Does response mode matter? Does motivation influence outcome? Are combined physiological measures better than single ones? Does gender have an effect on physiological responsivity during a polygraph examination? Results demonstrated real variations between the physiological measures used. Gender differences were also observed in polygraph response patterns. These findings are discussed in relation to the validity of the Guilty Knowledge Test.
In June 2014, the H3Africa Working Group on Ethics organised a workshop with members of over 40 research ethics committees from across Africa to discuss the ethical challenges raised in H3Africa ...research, and to receive input on the proposed H3Africa governance framework. Prominent amongst a myriad of ethical issues raised by meeting participants were concerns over consent for future use of samples and data, the role of community engagement in large international collaborative projects, and particular features of the governance of sample sharing. This report describes these concerns in detail and will be informative to researchers wishing to conduct genomic research on diseases pertinent to the African research context.
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