In their analysis of how much fetal genetic information prospective parents should be able to access, Bayefsky and Berkman determine that parents should only be able to access information th...

Research integrity is fundamental to the validity and reliability of scientific findings, and for ethical conduct of research. As part of PRINTEGER (Promoting Integrity as an Integral Dimension of Excellence in Research), this study explores the views of researchers, research managers, administrators, and governance advisors in Estonia, Italy, Norway and UK, focusing specifically on their understanding of institutional and organisational influences on research integrity.A total of 16 focus groups were conducted. Thematic analysis of the data revealed that competition is pervasive (...) and appeared in most themes relating to integrity. The structural frameworks for research such as funding, evaluation and publication were thought to both protect and, more commonly, undermine integrity. In addition, institutional systems, including workload and research governance, shaped participants’ day-to-day work environment, also affecting research integrity. Participants also provided ideas for promoting research integrity, including training, and creating conditions that would be supportive of research integrity.These findings support a shift away from individual blame and towards the need for structural and institutional changes, including organisations in the wider research environment, for example funding bodies and publishing companies. (shrink)

Non-invasive prenatal testing is an emerging form of prenatal genetic testing that provides information about the genetic constitution of a foetus without the risk of pregnancy loss as a direct result of the test procedure. As with other prenatal tests, information from NIPT can help to make a decision about termination of pregnancy, plan contingencies for birth or prepare parents to raise a child with a genetic condition. NIPT can also be used by women and couples to test purely ‘for (...) information’. Here, no particular action is envisaged following the test; it is motivated entirely by an interest in the result. The fact that NIPT can be performed without posing a risk to the pregnancy could give rise to an increase in such requests. In this paper, we examine the ethical aspects of using NIPT ‘purely for information’, including the competing interests of the prospective parents and the future child, and the acceptability of testing for ‘frivolous’ reasons. Drawing on several clinical scenarios, we claim that arguments about testing children for genetic conditions are relevant to this debate. In addition, we raise ethical concerns over the potential for objectification of the child. We conclude that, in most cases, using NIPT to test for adult-onset conditions, carrier status or non-serious traits presenting in childhood would be unacceptable. (shrink)

Empirical evidence suggests that some health professionals believe consent procedures for the emerging technology of non-invasive prenatal diagnosis (NIPD) should become less rigorous than those currently used for invasive prenatal testing. In this paper, we consider the importance of informed consent and informed choice procedures for protecting autonomy in those prenatal tests which will give rise to a definitive result. We consider whether there is anything special about NIPD that could sanction a change to consent procedures for prenatal diagnosis or (...) otherwise render informed decision-making less important. We accept the claim that the absence of risk of miscarriage to some extent lessens the gravity of the decision to test compared with invasive methods of testing. However, we also claim that the definitive nature of the information received, and the fact that the information can lead to decisions of great significance, makes NIPD an important choice. This choice should only be made by means of a rigorous and appropriately supported decision-making process (assuming that this is what the pregnant woman wants). We conclude that, on balance, consent procedures for NIPD should mirror those for invasive testing, albeit without the need to emphasise procedure-related risk. (shrink)

Recent scientific advances mean the widespread introduction of non-invasive prenatal diagnosis (NIPD) for chromosomal aneuploidies may be close at hand, raising the question of how NIPD should be introduced as part of antenatal care pathways for pregnant women. In this paper, the authors examine the ethical implications of three hypothetical models for using NIPD for aneuploidy in state-funded healthcare systems and assess which model is ethically preferable. In comparing the models, the authors consider their respective timings; how each model would (...) fit with current screening and diagnostic tests offered to pregnant women; the implications of offering NIPD at different stages of pregnancy; and the potential for each model to support reproductive autonomy and informed decision-making. The authors conclude by favouring a model that would be offered at 11–13 weeks gestation, alongside existing combined screening, provided that this is accompanied by measures to maximise informed decision-making, for example, provision of adequate pretest and post-test counselling. (shrink)

Pharmacists who refuse to provide certain services or treatment for reasons of conscience have been criticized for failing to fulfil their professional obligations. Currently, individual pharmacists in Great Britain can withhold services or treatment for moral or religious reasons, provided they refer the patient to an alternative source. The most high-profile cases have concerned the refusal to supply emergency hormonal contraception, which will serve as an example in this article.I propose that the pharmacy profession's policy on conscientious objections should be (...) altered slightly. Building on the work of Brock and Wicclair, I argue that conscientious refusals should be acceptable provided that the patient is informed of the service, the patient is redirected to an alternative source, the refusal does not cause an unreasonable burden to the patient, and the reasons for the refusal are based on the core values of the profession. Finally, I argue that a principled categorical refusal by an individual pharmacist is not morally permissible. I claim that, contrary to current practice, a pharmacist cannot legitimately claim universal exemption from providing a standard service, even if that service is available elsewhere. (shrink)

It is widely accepted in the pharmacy profession that pharmacists have the right to conscientiously refuse to participate in certain practices on grounds of conscience. This is allowed in recognition of differences in moral and religious views and out of respect for moral integrity. However, the “conscience clause” does not necessarily sit easily in a professional code of ethics owing to the potential tensions between a professional’s personal moral integrity and her professional obligations. At the heart of these tensions are (...) philosophical questions about the nature of conscience and integrity.These in turn lead to important practical ethical questions about the adequacy of a conscience clause to protect integrity and patient’s rights and guard against wrongdoing, whether conscientious refusals should be publicly announced in advance and what the acceptable bases of a conscientious refusal might be. Such questions apply not just to the professional, but also to pharmacy students, who may hold conscientious objections to some aspects of their training.It is concluded that the conventional compromise that is commonly in place in the pharmacy profession is a workable but imperfect solution and that better understanding of the concepts and competing obligations may be achieved by learning more about conscientious decision-making by pharmacists in practice. (shrink)

It is unarguable that the implementation and use of noninvasive prenatal testing (NIPT) should be critical and appropriate. After all, decisions that influence when and how to have children have ut...