Rebecca Bennett

The Fallacy of the Principle of Procreative Beneficence

The claim that we have a moral obligation, where a choice can be made, to bring to birth the best child possible, has been highly controversial for a number of decades. More recently Savulescu has labelled this claim the Principle of Procreative Beneficence. It has been argued that this Principle is problematic in both its reasoning and its implications, most notably in that it places lower moral value on the disabled. Relentless criticism of this proposed moral obligation, however, has been unable, thus far, to discredit this Principle convincingly and as a result its influence shows no sign of abating. I will argue that while criticisms of the implications and detail of the reasoning behind it are well founded, they are unlikely to produce an argument that will ultimately discredit the obligation that the Principle of Procreative Beneficence represents. I believe that what is needed finally and convincingly to reveal the fallacy of this Principle is a critique of its ultimate theoretical foundation, the notion of impersonal harm. In this paper I argue that while the notion of impersonal harm is intuitively very appealing, its plausibility is based entirely on this intuitive appeal and not on sound moral reasoning. I show that there is another plausible explanation for our intuitive response and I believe that this, in conjunction with the other theoretical criticisms that I and others have levelled at this Principle, shows that the Principle of Procreative Beneficence should be rejected.

When Intuition is Not Enough. Why the Principle of Procreative Beneficence Must Work Much Harder to Justify Its Eugenic Vision

The Principle of Procreative Beneficence (PPB) claims that we have a moral obligation, where choice is possible, to choose to create the best child we can. The existence of this moral obligation has been proposed by John Harris and Julian Savulescu and has proved controversial on many levels, not least that it is eugenics, asking us to produce the best children we can, not for the sake of that childs welfare, but in order to make a better society. These are strong claims that require robust justification that can be open to scrutiny and debate. This article argues that robust justifications are currently lacking in the work of Savulescu and Harris. The justifications provided for their conclusions about this obligation to have the best child possible rely heavily on Derek Parfits Non-Identity Problem and the intuitive response this provokes in many of us. Unfortunately Harris and Savulescu do not embrace the entirety of the Non-Identity Problem and the puzzle that it presents. The Non-Identity Problem actually provides a refutation of PPB. In order to establish PPB as a credible and defendable principle, Harris and Savulescu need to find what has eluded Parfit and many others: a solution to the Non-Identity Problem and thus an overturning of the refutation it provides for PPB. While Harris and Savulescu do hint at possible but highly problematic solutions to the Non-Identity Problem, these are not developed or defended. As a result their controversial is left supported by little more than intuition.

Provision of information about newborn screening antenatally: a sequential exploratory mixed-methods project

BACKGROUNDnParticipation in the UK Newborn Bloodspot Screening Programme (NBSP) requires parental consent but concerns exist about whether or not this happens in practice and the best methods and timing to obtain consent at reasonable cost.nnnOBJECTIVESnTo collate all possible modes of prescreening communication and consent for newborn (neonatal) screening (NBS); examine midwives, screening professionals and users views about the feasibility, efficiency and impact on understanding of each; measure midwives and parents preferences for information provision; and identify key drivers of cost-effectiveness for alternative modes of information provision.nnnDESIGNnSix study designs were used: (1) realist review - to generate alternative communication and consent models; (2) qualitative interviews with parents and health professionals - to examine the implications of current practice for understanding and views on alternative models; (3) survey and observation of midwives - to establish current costs; (4) stated preference surveys with midwives, parents and potential future parents - to establish preferences for information provision; (5) economic analysis - to identify cost-effectiveness drivers of alternative models; and (6) stakeholder validation focus groups and interviews - to examine the acceptability, views and broader impact of alternative communication and consent models.nnnSETTINGnProviders and users of NBS in England.nnnPARTICIPANTSnStudy 2: 45 parents and 37 health professionals; study 3: 22 midwives and eight observations; study 4: 705 adults aged 18-45 years and 134 midwives; and study 6: 12 health-care professionals and five parents.nnnRESULTSnThe realist review identified low parental knowledge and evidence of coercive consent practices. Interview, focus group and stated preference data suggested a preference for full information, with some valuing this more than choice. Health professionals preferred informed choice models but parents and health professionals queried whether or not current consent was fully informed. Barriers to using leaflets effectively were highlighted. All studies indicated that a personalised approach to NBS communication, allowing parents to select the mode and level of information suited to their learning needs, could have added value. A personalised approach should rely on midwife communication and should occur in the third trimester. Overall awareness was identified as requiring improvement. Starting NBS communication by alerting parents that they have a choice to make and telling them that samples could be stored are both likely to enhance engagement. The methods of information provision and maternal anxiety causing additional visits to health-care professionals were the drivers of relative cost-effectiveness. Lack of data to populate an economic analysis, confirmed by value of information analysis, indicated a need for further research.nnnLIMITATIONSnThere are some limitations with regard to the range of participants used in studies 2 and 3 and so caution should be exercised when interpreting some of the results.nnnCONCLUSIONSnThis project highlighted the importance of focusing on information receipt and identified key communication barriers. Health professionals strongly preferred informed consent, which parents endorsed if they were made aware of sample storage. Uniform models of information provision were perceived as ineffective. A choice of information provision was supported by health professionals and parents, which both enhances cost-effectiveness and improves engagement, understanding and the validity of consent. Remaining uncertainties suggest that more research is needed before new communication modes are introduced into practice. Future research should measure the impact of the suggested practice changes (informing in third trimester, information toolkits, changed role of midwife).nnnTRIAL REGISTRATIONnCurrent Controlled Trials ISRCTN70227207.nnnFUNDINGnThis project was funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 21, No. 55. See the NIHR Journals Library website for further project information.

WHAT ROLE SHOULD PUBLIC OPINION PLAY IN ETHICO-LEGAL DECISION MAKING? THE EXAMPLE OF SELECTING SEX FOR NON-MEDICAL REASONS USING PREIMPLANTATION GENETIC DIAGNOSIS.

In this article, we consider the prohibition on the use of preimplantation genetic diagnosis to select an embryo on the basis of its sex for non -: medical reasons. We use this as a case study to explore the role that public consultations have and should play in ethico-legal decision-making. Until the Human Fertilisation and Embryology Act 1990 was amended by the Human Fertilisation and Embryology Act 2008, non-medical sex selection of an embryo was not statutorily regulated, but it was the policy of the Human Fertilisation and Embryology Authority that such selection should not occur. However, since 2009, it has been a criminal offence to select an embryo on the basis of its sex for non-medical reasons. We consider the reasons given for this change and explore the role that public opinion had in the decision-making process. On the face of it, asking the public what they think seems reasonable, fair and democratic, and those who are not in favour of public consultations being accorded great weight in matters of policy may appear out of touch and as wanting to impose their moral views on the public at large. But there are problems with doing so, especially when seeking to regulate ethically controversial issues. We discuss whether regulation should be influenced by public opinion obtained via public consultations, and utilise sex selection for non-medical reasons as an example of how (apparently) public opinion was used to support the criminalisation of this practice.

DECISION MAKING IN EXPANDED NEWBORN SCREENING; A QUALITATIVE STUDY EXAMINING CONSENT AND COMMUNICATION PREFERENCES OF PARENTS IN THE UK

WEB-ONLY ABSTRACTS E79 PS1-3 OVERTREATMENT AND COST-EFFECTIVENESS OF SEE-AND-TREAT APPROACH IN MANAGING CERVICAL SQUAMOUS INTRAEPITHELIAL LESIONS IN THE US SETTING Applied Health Economics (AHE) Kalatu R. Davies, Ph.D., Van T. Nghiem, M.S.P.H., J. Robert Beck, M.D., Michele Follen, MD, PhD and Scott B. Cantor, Ph.D., (1)The University of Texas MD Anderson Cancer Center, Department of Health Services Research, Houston, TX, (2)Fox Chase Cancer Center, Philadelphia, PA, (3)Department of Obstetrics & Gynecology, Brookdale University Hospital & Medical Center, Brooklyn, NY, (4)The University of Texas MD Anderson Cancer Center, Houston, TX

Is there a case for criminalising vertical transmission of Human Immunodeficiency Virus (HIV) from mother to child

Vertical transmission of HIV is transmission of the virus from an HIV infected woman to her foetus during pregnancy, birth, or breastfeeding. Recklessly transmitting HIV to another person via sexual contact is now considered to be a criminal offence in many jurisdictions and the wording of such criminal sanctions is such that it may well be possible to extend such prosecutions to vertical transmission of HIV. While there have been no attempts, thus far, to extend these criminal sanctions in this way, there have and continue to be attempts to compel pregnant women to act to protect their future children from harm and thus criminalisation of vertical transmission of HIV may well be considered. This article asks the question: Is it appropriate to allow the criminalisation of reckless vertical transmission of HIV? I argue that any projected benefits of criminalisation of vertical transmission are at best tentative and the undesirable consequences of such a move are clear and may be disastrous for the rights of women.

Bioethics, Medicine and the Criminal Law: Death, dying and the criminal law

This volume offers balanced arguments that will help the reader form a reasoned view on the ethical legitimacy of the invocation of the criminal law to regulate medical practice and issues of bioethics. It aims to shed light on the question of who should define what constitutes ethical, and thus lawful medical practice? The judges, the doctors and scientists or someone else? To this end, it analyses how effectively the criminal justice system can, and does operate as a forum for resolving ethical conflict in the delivery of health care? Key questions that will be addressed include: How does the criminal law regulate controversial bioethical areas? Is the use of the criminal law in these areas appropriate or desirable? What effect, positive or negative does the use of the criminal law have when regulating bioethical conflict? The volume will explore criminal law in theory and in practice and the broad field of bioethics rather than the narrower terrain of medical ethics. Whilst numerous chapters will focus on criminal law within the specific context of health care, others will address scientific research and biotechnologies. Authors of chapters from Lancaster University: Sara Fovargue and Suzanne Ost.

Bioethics, Medicine and the Criminal Law: Acknowledgements

This volume offers balanced arguments that will help the reader form a reasoned view on the ethical legitimacy of the invocation of the criminal law to regulate medical practice and issues of bioethics. It aims to shed light on the question of who should define what constitutes ethical, and thus lawful medical practice? The judges, the doctors and scientists or someone else? To this end, it analyses how effectively the criminal justice system can, and does operate as a forum for resolving ethical conflict in the delivery of health care? Key questions that will be addressed include: How does the criminal law regulate controversial bioethical areas? Is the use of the criminal law in these areas appropriate or desirable? What effect, positive or negative does the use of the criminal law have when regulating bioethical conflict? The volume will explore criminal law in theory and in practice and the broad field of bioethics rather than the narrower terrain of medical ethics. Whilst numerous chapters will focus on criminal law within the specific context of health care, others will address scientific research and biotechnologies. Authors of chapters from Lancaster University: Sara Fovargue and Suzanne Ost.

Bioethics, Medicine and the Criminal Law: Contributors

This volume offers balanced arguments that will help the reader form a reasoned view on the ethical legitimacy of the invocation of the criminal law to regulate medical practice and issues of bioethics. It aims to shed light on the question of who should define what constitutes ethical, and thus lawful medical practice? The judges, the doctors and scientists or someone else? To this end, it analyses how effectively the criminal justice system can, and does operate as a forum for resolving ethical conflict in the delivery of health care? Key questions that will be addressed include: How does the criminal law regulate controversial bioethical areas? Is the use of the criminal law in these areas appropriate or desirable? What effect, positive or negative does the use of the criminal law have when regulating bioethical conflict? The volume will explore criminal law in theory and in practice and the broad field of bioethics rather than the narrower terrain of medical ethics. Whilst numerous chapters will focus on criminal law within the specific context of health care, others will address scientific research and biotechnologies. Authors of chapters from Lancaster University: Sara Fovargue and Suzanne Ost.

Bioethics, Medicine and the Criminal Law: Freedom and autonomy: when consent is not enough

This volume offers balanced arguments that will help the reader form a reasoned view on the ethical legitimacy of the invocation of the criminal law to regulate medical practice and issues of bioethics. It aims to shed light on the question of who should define what constitutes ethical, and thus lawful medical practice? The judges, the doctors and scientists or someone else? To this end, it analyses how effectively the criminal justice system can, and does operate as a forum for resolving ethical conflict in the delivery of health care? Key questions that will be addressed include: How does the criminal law regulate controversial bioethical areas? Is the use of the criminal law in these areas appropriate or desirable? What effect, positive or negative does the use of the criminal law have when regulating bioethical conflict? The volume will explore criminal law in theory and in practice and the broad field of bioethics rather than the narrower terrain of medical ethics. Whilst numerous chapters will focus on criminal law within the specific context of health care, others will address scientific research and biotechnologies. Authors of chapters from Lancaster University: Sara Fovargue and Suzanne Ost.