Silvia Camporesi

This OPEN ACCESS article is the lead article of the Journal of Bioethical Inquiry 2017 “Public Trust in Expert Knowledget” symposium, which examines the social, cultural, and ethical ramifications of changing public trust in the expert biomedical knowledge systems of emergent and complex global societies. This symposium was conceived as an interdisciplinary project, drawing on bioethics, the social sciences, and the medical humanities. We settled on public trust as a topic for our work together… Show more

This OPEN ACCESS article is the lead article of the Journal of Bioethical Inquiry 2017 “Public Trust in Expert Knowledget” symposium, which examines the social, cultural, and ethical ramifications of changing public trust in the expert biomedical knowledge systems of emergent and complex global societies. This symposium was conceived as an interdisciplinary project, drawing on bioethics, the social sciences, and the medical humanities. We settled on public trust as a topic for our work together because its problematization cuts across our fields and substantive research interests. For us, trust is simultaneously a matter of ethics, social relations, and the cultural organization of meaning. We share a commitment to narrative inquiry across our fields of expertise in the bioethics of transformative health technologies, public communications on health threats, and narrative medicine. The contributions to this symposium have applied, in different ways and with different effects, this interdisciplinary mode of inquiry, supplying new reflections on public trust, expertise, and biomedical knowledge. Show less

This OPEN ACCESS paper provides an overview of the ethical issues in the international clustered regularly interspaced short palindromic repeats (CRISPR) genome editing debate from March 2015 to September 2016. We present the regulatory framework for embryo research in the UK, and explain why CRISPR is not a significant break with the past. We discuss the ethical issues arising from CRISPR applications beyond human embryos, namely the use of gene drive-engineered mosquitoes to eradicate… Show more

This OPEN ACCESS paper provides an overview of the ethical issues in the international clustered regularly interspaced short palindromic repeats (CRISPR) genome editing debate from March 2015 to September 2016. We present the regulatory framework for embryo research in the UK, and explain why CRISPR is not a significant break with the past. We discuss the ethical issues arising from CRISPR applications beyond human embryos, namely the use of gene drive-engineered mosquitoes to eradicate diseases, engineering nonhuman animals to harvest organs for human transplant and engineering crops. We discuss the experiments that have demonstrated the technical feasibility of cultivating embryos in vitro for up to 14 days, and possibly beyond this limit, and the ethical issues arising from the proposal to extend the limit beyond 14 days. Show less

This paper is the result of a collaborative work between researchers based in UK, Italy, China and Brazil, and aims at providing a comprehensive review of practices and meanings of Non-Invasive Prenatal Testing (NIPT) in these countries, while also highlighting the ethical implications that NIPT poses. In the first part of this paper we describe how the technology is being integrated into the ‘moral economy’ of prenatal testing in the different countries we analysed. In the second section of… Show more

This paper is the result of a collaborative work between researchers based in UK, Italy, China and Brazil, and aims at providing a comprehensive review of practices and meanings of Non-Invasive Prenatal Testing (NIPT) in these countries, while also highlighting the ethical implications that NIPT poses. In the first part of this paper we describe how the technology is being integrated into the ‘moral economy’ of prenatal testing in the different countries we analysed. In the second section of the paper, we position NIPT within the trajectory of prenatal diagnosis that displays the role of conflicting values and often incommensurable moral economies in the emergence of new technologies, and in their transformation into routine medical procedures. [...] We then consider some of the ethical issues raised by NIPT, including the argument that NIPT will lead to a harmful bias towards people with Down syndrome and to an increase in termination rates; and the ethical issues raised possible incidental findings resulting from a maternal chromosomal mosaicisms, and other hidden abnormalities in one of the parents, including genetic diseases with late expressions in life. We note how the counselling step following incidental finding will be of the utmost importance and that in many countries, including the ones we analysed, doctors and healthcare professionals are not adequately prepared for it. We conclude that it is important that bioethics scholarship engages proactively with the ethical issues that arise at the nexus of these conflicting values and moral economies, especially as future evolutions of NIPT combined with whole genome sequencing (WGS) will affect women's reproductive decisions, and shape the scope of their reproductive choices, in a way that will lead to a completely new level of ‘supervision’, ‘management’ and ‘scrutiny’ of human foetuses and pregnant women. Show less

But even if testosterone did confer an athletic advantage, this advantage would not be unfair. This is because setting a limit on hyperandrogenism and singling it out from other biological variations that may confer an advantage is – at best – an inconsistent policy. There are plenty of other variations – biological and genetic alike – that are not regulated by the IAAF and, even though advantageous for athletic performance, are not considered unfair for competition.

The increasing tendency to run clinical trials offshore in low- and middle-income countries (LMICs) has been extensively documented. In parallel, in high-income countries (HICs) as the US, we are witnessing the emergence of new forms of clinical research where un(der)insured fractions of the population are trading access for participation to health-care to which they would otherwise not have access. We first discuss Wertheimer’s analysis of off-shored clinical trials as mutually advantageous… Show more

The increasing tendency to run clinical trials offshore in low- and middle-income countries (LMICs) has been extensively documented. In parallel, in high-income countries (HICs) as the US, we are witnessing the emergence of new forms of clinical research where un(der)insured fractions of the population are trading access for participation to health-care to which they would otherwise not have access. We first discuss Wertheimer’s analysis of off-shored clinical trials as mutually advantageous exploitative transactions. We then argue that to make sense of what is morally problematic with the offshoring of clinical research it is necessary to broaden the ethical analysis, as there are different kinds of moral wrongs that can be linked to exploitation. We then further broaden our gaze beyond exploitation to analyse a distinct sort of moral wrong inherent in the off-shoring of clinical research, namely the sponsors’ complicity in perpetuating the injustice of the background conditions of the
participants. We argue that both modes of participation in clinical research highlighted above
share the feature of ‘trading participation for access to health-care’, and that this is a morally relevant characteristic that should be taken into consideration in the ethical analysis, and that in some cases justify intervention to prevent subjects from participating in clinical trials. We conclude that as health-care provision and clinical trial participation have been and continue to be strictly intertwined both in LMICs and in HICs, in both contexts, there is a need to devise ways to make the inclusion of economically disadvantaged and uninsured individuals in clinical research as fair as possible. Show less

The problem of doping in sport is not about to go away. Legitimising safe doping under medical control will do little to prevent clandestine use of dangerous performance-enhancing substances. The only practicable solution we can see is to widen the search for those who are culpable, not absolving the doping competitors from guilt, but recognising that those who control the ‘payoff matrix’ have at least as much responsibility for the corruption of sport as do the athletes themselves.

In this paper we discuss the ethics of genetics-based talent identification programmes in sports. We discuss the validity and reliability of the tests and the claims made by direct to consumer companies, before presenting a range of ethical issues concerning child-parent/guardian relations raised by these tests, which we frame in terms of parental duties, children's rights, and best interests. We argue that greater ethical emphasis needs to be put on the parental decision on the wellbeing on… Show more

In this paper we discuss the ethics of genetics-based talent identification programmes in sports. We discuss the validity and reliability of the tests and the claims made by direct to consumer companies, before presenting a range of ethical issues concerning child-parent/guardian relations raised by these tests, which we frame in terms of parental duties, children's rights, and best interests. We argue that greater ethical emphasis needs to be put on the parental decision on the wellbeing on the child going forward, not on ex post justifications on the basis of the consequences. Best Interests decisions, made by a third party seem to comprise both subjective and objective elements but only a holistic approach can do justice to these questions by addressing the wellbeing of the child in a temporal manner and taking into account the child's perspective on its wellbeing. Such decisions must address wider questions of what a good (sports)parent ought do to help the child flourish and how to balance the future-adult focus necessary to nurture talent with the wellbeing of the child in the present. We conclude that current genetic tests for 'talent' do not predict aptitude or success to any significant degree and are therefore only marginally pertinent for talent identification. Claims that go beyond current science are culpable, and attempt to exploit widespread but naïve perceptions of the efficacy of genetics information to predict athletic futures. Sports physicians and health care professionals involved in sport medicine should therefore discourage the use of these tests. Show less

Key points:
1) IAAF Hyperandrogenism Regulations are flawed on a scientific level because it has not been proved that testosterone confers an advantage in competition.

2) IAAF Hyperandrogenism Regulations raise issues of consistencies on two levels: other molecular and genetic variations that confer an advantage in competition are not considered unfair; and there is no upper limit for testosterone in the male category.

3) IAAF Hyperandrogenism Regulations raise ethical issues at the… Show more

Key points:
1) IAAF Hyperandrogenism Regulations are flawed on a scientific level because it has not been proved that testosterone confers an advantage in competition.

2) IAAF Hyperandrogenism Regulations raise issues of consistencies on two levels: other molecular and genetic variations that confer an advantage in competition are not considered unfair; and there is no upper limit for testosterone in the male category.

3) IAAF Hyperandrogenism Regulations raise ethical issues at the level of implementation because the trigger for testing is visual perception and hence they pressure female athletes
into conforming to stereotypical feminine standards.

4) IAAF Hyperandrogenism Regulations raise medical concerns because they unnecessarily medicalize a condition (hyperandrogenism) in female athletes with long-term side effects.

5) We need to be critical of the grounds on which the Court of Arbitration for Sport (CAS) has suspended the IAAF Hyperandrogenism Regulations on July 27, 2015, because CAS is
buying into the IAAF flawed assumption that if there were a sufficient body of evidence to demonstrate a correlation between testosterone and competitive advantage, this would be unfair and would constitute grounds to reinstate the hyperandrogenism regulations. Show less

What is it to talk about gene transfer, gene therapy, and gene doping? Is choosing deafness with preimplantation genetic diagnosis an ethical way to carry on a cultural bloodline? What are the ethical and social implications of genetic testing to identify precocious talents? Should sponsors be held responsible for the doping behaviours of their athletes? These are only some of the questions that Dr. Silvia Camporesi addresses in this book, through a contextual, bottom up approach based on… Show more

What is it to talk about gene transfer, gene therapy, and gene doping? Is choosing deafness with preimplantation genetic diagnosis an ethical way to carry on a cultural bloodline? What are the ethical and social implications of genetic testing to identify precocious talents? Should sponsors be held responsible for the doping behaviours of their athletes? These are only some of the questions that Dr. Silvia Camporesi addresses in this book, through a contextual, bottom up approach based on real-world ethical dilemmas. This book represents a unique contribution to the debate on enhancement technologies as it spans from the bench of molecular biology where the technologies are being developed, to the bedside of a clinical trial where they are used for selective reproduction or for first-in-human gene therapy studies, to the track & field where they are being applied to enhance human athletic performance. These investigations address current debates regarding the resurgence of eugenics in relation to genetic technologies, and provide a clear and much needed ethical autopsy of contemporary genetic practices.

Foreword by Professor Søren Holm, University of Manchester. Show less