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Article round up: July 2010

13 August 2010

Welcome to your July 2010 article list a-go-go

Comments and observations welcome as always.

Stuart

Maglo, KN. GENOMICS AND THE CONUNDRUM OF RACE some epistemic and ethical considerations. PERSPECTIVES IN BIOLOGY AND MEDICINE 53 (3): 357-372 SUM 2010

This article addresses the question of whether race is a biological category and whether it is permissible to use it in biomedicine. I suggest that instrumentalism, a view that race is a problem-solving tool rather than a concept with an objective referent in nature, may be more consistent with the available scientific evidence. I argue that, to be morally permissible, the instrumentalist use of race in research and medicine requires stringent guidelines. I then provide four normative rules to guide race research in the biomedical sciences. The paper gathers evidence from philosophy of science, genomics, legal history, and normative ethics in order to ground the biomedical use of race in a converging ethical and epistemic framework.

McKanna, TA; Toriello, HV. Gene Doping: The Hype and the Harm. PEDIATRIC CLINICS OF NORTH AMERICA 57 (3): 719-727 JUN 2010

“Gene doping” is the term used to describe the potential abuse of gene therapy as a performance-enhancing agent. Gene doping would apply the techniques used in gene therapy to provide altered expression of genes that would promote physical superiority For example, insulin-like growth factor 1 (IGF-1) is a primary target for growth hormone, overexpression of IGF-1 can lead to increased muscle mass and power Although gene doping is still largely theoretical, its implications for sports, health, ethics, and medical genetics are significant

Stol, YH; Menko, FH; Westerman, MJ; Janssens, RMJPA. Informing family members about a hereditary predisposition to cancer: attitudes and practices among clinical geneticists. JOURNAL OF MEDICAL ETHICS 36 (7): 391-395 JUL 2010

If a hereditary predisposition to colorectal cancer or breast cancer is diagnosed, most guidelines state that clinical geneticists should request index patients to inform their at-risk relatives about the existence of this condition in their family, thus enabling them to consider presymptomatic genetic testing. Those identified as mutation carriers can undertake strategies to reduce their risk of developing the disease or to facilitate early diagnosis. This procedure of informing relatives through the index patient has been criticised, as it results in relatively few requests for genetic testing, conceivably because a certain number of relatives remain uninformed. This pilot study explored attitudes toward informing family members and relevant practices among clinical geneticists. In general, clinical geneticists consider it to be in the interests of family members to be informed and acknowledge that this goal is not accomplished by current procedures. The reasons given for maintaining present practices despite this include clinical ‘mores’, uncertainty about the legal right of doctors to inform family members themselves, and, importantly, a lack of resources. We discuss these reasons from an ethical point of view and conclude that they are partly uninformed and inconsistent. If informing relatives is considered to be in their best interests, clinical geneticists should consider informing relatives themselves. In the common situation in which index patients do not object to informing relatives, no legal obstacles prevent geneticists from doing so. An evaluation of these findings among professionals may lead to a more active approach in clinical practice.

Turney, L. The making and breaking of paternity secrets in donor insemination. JOURNAL OF MEDICAL ETHICS 36 (7): 401-406 JUL 2010

This paper analyses the complex issues faced by regulators of the infertility treatment industry in response to the social and technological changes that heralded a new openness in knowledge about genetics, paternity and the concomitant need for donor offspring to know their genetic origins. The imperative for full information about their donor and biological father, who contributed to their creation and half of their genome, was an outcome unanticipated by the architects of the donor insemination programme. Genetic paternity testing realised the possibility of fixed and certain knowledge about paternity. This paper outlines medicine’s role in the formation of normative families through the use of donor insemination. Extending information from an Australian study on the use of DNA paternity testing, it analyses what the social and scientific changes that have emerged and gained currency in the last several decades mean for the new ‘openness’ and the role of paternity testing in this context. It concludes with recommendations about how to deal with the verification of paternity in linking donor conceived adult children to their donor.

Jordan, BR; Tsai, DFC. Whole-genome association studies for multigenic diseases: ethical dilemmas arising from commercialization-the case of genetic testing for autism. JOURNAL OF MEDICAL ETHICS 36 (7): 440-444 JUL 2010

This paper examines some ethical issues arising from whole-genome association studies for multigenic diseases, focusing on the case of autism. Events occurring following the announcement of a genetic test for autism in France (2005-2009) are described to exemplify the ethical controversies that can arise when genetic testing for autism is applied prematurely and inappropriately promoted by biotech companies. The authors argue that genetic tests assessing one or a few genes involved in highly multigenic disorders can only be useful if: (1) the genetic linkage found in the scientific study must be statistically convincing, reproducible and also applicable to the population to which the individual considered belongs (scientific validity); (2) the relative risk conferred by the ‘high-risk’ allele should be high enough to be significant to the patient (significant impact); (3) use of the test should lead to some improvement of outcome for the patient, resulting from adapted treatment if available, or at least from adjustment of lifestyle (or life goals) prompted by the new knowledge generated (clinical utility). Decisions concerning genetic testing for autism involve scientific judgement, value judgement and good knowledge of a constantly evolving therapeutic environment. The implementation of genetic tests for highly multigenic diseases thus requires strong mechanisms to ensure that they are used in a fashion that can benefit patients, and these mechanisms must be able to cope with rapid progress in scientific knowledge and therapeutic intervention.

Leontini, R. Genetic counselling as care of the self. HEALTH 14 (4): 383-397 JUL 2010

Genetic counselling has frequently been described as a disciplinary practice, with the goal of ‘risk reduction’. In this article another dimension to genetic counselling is considered through the Foucauldian theorization on the care of the self. Drawing on narrative analysis, I examine how one informant undergoing genetic counselling interprets the technique of imagining alternative futures learned through counselling, and transforms it into an ethical practice of self-care. The findings suggest that what may begin as a medical issue with implications for one’s health, becomes a meditation over one’s disposition towards life, in a way that is consonant with one’s desires and values.

Rybak, EA; Bevilacqua, K; Veit, CR; Klugman, SD; Santoro, N. Sibling and self ovum donation for sisters with an intermediate FMR1 mutation: what’s a program to do? FERTILITY AND STERILITY 92 (1): Art. No. 394.e9 JUL 2009

Objective: To increase awareness of the unique clinical and ethical considerations invoked by the request of a patient with premature ovarian failure (POF) and her nulliparous sister, both with intermediate-size mutations in fragile X mental retardation 1 (FMR1), to pursue sibling ovum donation.

Design: Case report. Setting: Academic medical center. Patient(s): A 32-year-old woman with POF and her 26-year-old sister with occult diminished ovarian reserve, both of whom are carriers of an intermediate-size mutation in FMR1. Intervention(s): Prospective donor ovarian function testing, genetic testing and consultation, and psychological evaluation; institutional assisted reproduction ethics committee consultation, and controlled ovarian hyperstimulation -IVF with cryopreservation of embryos for potential future self-use. Main Outcome Measure(s): Successful cryopreservation of embryos for autologous use by the prospective donor (younger sister) before ovum donation. Results(s): Three blastocysts were frozen. Conclusion(s): Requests for sibling ovum donation, while understandable and ethically sanctioned under typical circumstances, prove particularly challenging in some patients with POF given uncertainties regarding the prognosis of the currently asymptomatic sister, risks of genetic transmission of POF, and fiduciary responsibilities to address the reproductive interests of the prospective donor. A multidisciplinary approach was highly beneficial in this case.

Treff, NR; Su, J; Tao, X; Miller, KA; Levy, B; Scott, RT. A novel single-cell DNA fingerprinting method successfully distinguishes sibling human embryos. FERTILITY AND STERILITY 94 (2): 477-484 JUL 2010

Objective: To validate a novel system for embryonic DNA fingerprinting which can reliably distinguish sibling embryos from each other. Design: Prospective, randomized, and blinded study. Setting: Academic center for reproductive medicine. Patient(s): Blastomeres were obtained from discarded and transferred embryos from six patients undergoing IVF treatment. Intervention(s): None. Main Outcome Measure(s): Single lymphocytes from sibling cell lines and blastomeres from sibling day 3 human embryos were evaluated for accurate assignment of relationship using whole genome amplification and single-nucleotide polymorphism microarrays. Result(s): Assignment of single-cell relationships was accomplished with 100% accuracy. We also observed complete agreement between the molecular karyotype and DNA fingerprint-based identification of embryos implanted in three clinical IVF cases after multiple embryo transfer. Conclusion(s): These data demonstrate the first single-blastomere DNA fingerprinting technology capable of unequivocal discrimination of sibling human embryos.

Strawn, EY; Bick, D; Swanson, A. Is it the patient or the IVF? Beckwith-Wiedemann syndrome in both spontaneous and assisted reproductive conceptions. FERTILITY AND STERILITY 94 (2): doi:10.1016/j.fertnstert.2010.01.067 JUL 2010

Objective: To describe two children diagnosed with Beckwith-Wiedemann Syndrome (BWS) arising from a spontaneous conception and an assisted reproductive technology (ART) cycle from one patient with a long-standing history of subfertility. Design: Case report. Setting: Academic medical center. Patient(s): Two children with the morphologic features of BWS as a result of a spontaneous conception and an ART cycle from the same patient. Intervention(s): Assisted reproductive technology. Main Outcome Measure(s): Neonatal and pediatric morphologic evaluation by geneticists. Result(s): Two children with the morphologic features consistent with the criteria for the diagnosis of BWS. Conclusion(s): Patients with subfertility may be carriers for genetic disorders that can be passed to a child with or without the use of assisted reproductive technologies (ART). The use of ART may bypass natural selection mechanisms.

Liao, JH; Dessein, B; Pennings, G. The ethical debate on donor insemination in China. REPRODUCTIVE BIOMEDICINE ONLINE 20 (7): 895-902 Suppl. S JUN 2010

This article gives an overview of the ethical thinking about donor insemination among Chinese ethicists. We analysed the ethical arguments dedicated to the use of donor spermatozoa published in the important bioethics journals of China of the last 15 years. On the one hand, the general Confucian values strongly favour the genetic link as it fits with the traditional importance attached to the continuation of the family line. Therefore, artificial insemination by donor (AID) is highly controversial in China because the involvement of a third party (the donor) severs the genetic link between the husband and his family. On the other hand, procreation is regarded as an important aspect of Confucian filial piety and it is a basic right of every human being to enjoy a family life. AID should be thought of as a means to help infertile couples to overcome infertility. Nowadays, Chinese bioethicists are trying to reinterpret Confucianism in order to adapt it to modernity. One such reinterpretation focuses on the affectionate rather than the genetic tie between parents and child. As the application is still new in China, more discussion and open debate on ethical aspects is needed.

Hogarth, S. Myths, Misconceptions and Myopia: Searching for Clarity in the Debate about the Regulation of Consumer Genetics. PUBLIC HEALTH GENOMICS 13 (5): 322-326 2010

The new wave of companies offering genome scans direct-to-consumer (DTC) has prompted commentary from scientists, clinicians, bioethicists and those interested in the ethical, legal and social issues arising from genomics. It has thus brought a far wider range of actors into a longstanding debate about the regulation of genetic tests. However, some of the recent discussion is characterised by misunderstanding of the regulatory landscape, a failure to grasp the lessons of the past and lack of clarity of thought. In this commentary I challenge a series of myths and misconceptions which plague current academic and policy discussion: the conflation of regulation and proscription; the failure to recognise that DTC companies are gatekeepers; the assumption that requiring a medical intermediary for testing is paternalistic; the belief that online services cannot be regulated; the presumption that we must avoid genetic exceptionalism; the idea that policy is lagging behind science or that it is too soon to act; and finally, the view that DTC genetics is a reality we have to adapt to.

Schoenl, W; Peck, D. Advertising eugenics: Charles M. Goethe’s campaign to improve the race. ENDEAVOUR 34 (2): 75-80 JUN 2010

Over the last several decades historians have shown that the eugenics movement appealed to an extraordinarily wide constituency. Far from being the brainchild of the members of any one particular political ideology, eugenics made sense to a diverse range of Americans and was promoted by professionals ranging from geneticists and physicians to politicians and economists.’ Seduced by promises of permanent fixes to national problems, and attracted to the idea of a scientifically legitimate form of social activism, eugenics quickly grew in popularity during the first decades of the twentieth century. Charles M. Goethe, the land developer, entrepreneur, conservationist and skilled advertiser who founded the Eugenics Society of Northern California, exemplifies the broad appeal of the eugenics movement. Goethe played an active role within the American eugenics movement at its peak in the 1920s. The last president of the Eugenics Research Association,2 he also campaigned hard against Mexican immigration to the US and he continued open support for the Nazi regime’s eugenic practices into the later 1930s.(3) This article examines Goethe’s eugenic vision and, drawing on his correspondence with the leading geneticist Charles Davenport, explores the relationship between academic and non-academic advocates of eugenics in America.

Chilvers, RA; Hossain, A; Phelps, JY. The Ethical Challenges of Providing Fertility Care to Patients with Chronic Illness or Terminal Disease. SEMINARS IN REPRODUCTIVE MEDICINE 28 (4): 303-314 JUL 2010

The field of fertility is rapidly evolving, bringing opportunities for improvement in our patients’ quality of life as well as bringing new ethical dilemmas. As medical science continues to advance, significant numbers of the reproductive-aged population are living with chronic and/or terminal conditions but have reasonable odds of lengthy survival and wish to have children. Likewise, there are adolescents diagnosed with cancer who are increasingly expected to achieve an improved, if not normal, life expectancy after treatment. Oftentimes these children are told they must sacrifice their ability to later have genetically related offspring; however, technologies to preserve fertility are changing this prognosis. Patients with chronic infection are living longer, more normal lives and are increasingly seeking reproductive assistance. Moreover, there is an increasing number of patients’ families desiring posthumous use of gametes, which also raises ethical and legal issues. This article discusses ethical principles of bioethics and then highlights specific ethical issues through four plausible cases that may be seen in a fertility practice providing medical care to patients with chronic illness or terminal disease. It concludes that prompt referral of patients to the reproductive endocrinologist, along with a multidisciplinary approach to care, provides increased chances of successful treatment of this group of patients.

Macklin, R. The Ethics of Sex Selection and Family Balancing. SEMINARS IN REPRODUCTIVE MEDICINE 28 (4): 315-321 JUL 2010

Ethical concerns about the ethics of selecting the sex of a child predate current techniques of prenatal genetic diagnosis (PGD) and sperm sorting. The only methods previously available were highly problematic, as they involved infanticide or abortion of an unwanted sex. PGD is less problematic than the earlier methods, yet still troubling to some because it involves destruction of a healthy embryo and risks to women. The technique of sperm sorting, still in an experimental phase, is the least ethically problematic method, yet opponents argue that sex selection by any means involves sex discrimination and can have undesirable consequences. One such consequence is an imbalance in the sex ratio. This imbalance already exists in some Asian countries that favor male children, but is less likely in Western Europe and North America. There is increasing acceptance of family balancing as a reason for sex selection, but some people remain opposed to broadening the indications for sex selection of offspring beyond family balancing. Nevertheless, parents may have good reasons other than family balancing for choosing the sex of a future child. Such reasons may be justified by the principle of reproductive liberty.

Nakhuda, GS. Posthumous Assisted Reproduction. SEMINARS IN REPRODUCTIVE MEDICINE 28 (4): 329-335 JUL 2010

Cryopreservation of gametes and embryos allows for children to be conceived after the death of their genetic parents through the process of posthumous assisted reproduction (PAR). Although the techniques are routine, the moral and ethical details are controversial and remain unsettled. Furthermore, there are numerous medicolegal implications that complicate matters. The principal parties to be considered are the decedent, the child who will be born of PAR, the significant other requesting the procedure, other living children, and even society at large. Numerous case studies exist and expert opinions have been published recognizing PAR as a vexing ethical issue. Most experts agree that explicit written consent forms signed at the time of cryopreservation are the best method to minimize some of the controversy involved with PAR.

Dommergues, M; Mandelbrot, L; Mahieu-Caputo, D; Boudjema, N; Durand-Zaleski, I. Termination of pregnancy following prenatal diagnosis in France: how severe are the foetal anomalies?PRENATAL DIAGNOSIS 30 (6): 531-539 JUN 2010

Objective: To determine how severe were the conditions leading to termination of pregnancy for foetal anomaly (TOPFA) in France. Methods: Detailed indications for TOPFA were extracted from medical charts. Results: Of 2465 completed records, indications were: chromosomal anomalies n = 963 (39.1%), malformations of a single organ without chromosomal or genetic aetiologies n = 898 (36.4%), multiple malformations without chromosomal or genetic aetiologies n = 238 (9.7%), obstetrical complications n = 161 (6.5%), nonchromosomal genetic diseases n = 158 (6.4%), foetal infections mm = 21 (0.9%), unexplained severe oligohydramnios n = 20 (0.8%), foetal exposure to teratogenic agents n = 6. Overall, 33.3% of anomalies were lethal (e.g. anencephaly), 25.2% were expected to result in isolated mental retardation (e.g. Down) and 35.1% in substantial handicap (e.g. myelomeningocele). In 6.4% of cases, the anomaly was either of late onset (e.g. Huntington’s disease) or with uncertain prognosis (e.g. agenesis of corpus callosum) or severity was debatable (e.g. single limb agenesis, sickle cell disease). Conclusions: Although there is no indisputable definition of which anomalies are ‘severe’, 93.6% of the decisions to terminate the pregnancy were made by women and professionals in reaction to anomalies which clearly were lethal or would lead to substantial physical and/or mental disabilities.

Polzer, J; Robertson, A. Seeing and knowing in twenty-first century genetic medicine: the clinical pedigree as epistemological tool and hybrid risk technique. NEW GENETICS AND SOCIETY 29 (2): 133-147 2010

This paper explores the clinical pedigree as a risk technique within the context of the predictive genetic testing (PGT) clinic. We situate the PGT clinic as a site of genetic governance in that it is a site both for the production of knowledge about genetic risk and for intervening in the everyday lives of individuals and their families who learn to cultivate their relations with themselves and their biological relatives in relation to genetic risk knowledge. Drawing on literature of the pedigree as socially constructed and on notions of risk governance, we suggest that the pedigree operates as an epistemological tool and risk technique – that is, as a visual device that assists in organizing the social relations of knowledge production and aids in effecting shifts in patient subjectivity in ways that are consistent with neoliberal notions of active citizenship.

Stackhouse, R; Anderson, C; Shaw, AM; Iredale, R. Avoiding the “usual suspects”: young people’s views of the National DNA Database. NEW GENETICS AND SOCIETY 29 (2): 149-166 2010

The aim of this project was to explore the views of young people, in particular those whose details are held on the National DNA Database (NDNAD), about some of the social and ethical issues surrounding the NDNAD. Ten focus groups revealed the majority of participants supported a universal DNA database; many thought taking a DNA sample should depend on the seriousness of the crime rather than the age of the person and that profiles of innocent people should be kept on the NDNAD. Participants’ main concern regarding their information being held on the NDNAD was that the police might be able to frame them for a crime because they had access to their DNA. We suggest that policymakers hold further public debates regarding the NDNAD, with a greater variety of people, in order to ensure that the views of all members of society are addressed and protected and that there is greater understanding about the regulation of the NDNAD.

Morris, LA. Life insurance and genetic tests: Risks for insurers and society. HEALTH RISK & SOCIETY 12 (3): 251-270 2010

The uncertainties surrounding the rapid advances being made in genetic testing and its subsequent use in the life insurance underwriting process has caused much consternation and apprehension throughout society and the insurance industry in recent years. The diagnostic and predictive power of genetic testing has introduced a new variable for insurers to select and classify applicants for life insurance. However, such use by insurers present many complex social, ethical and regulatory questions. This paper explores life insurers’ use of genetic test results and the consequences for insurers should they be denied access to this actuarially relevant material. In addition, the risks posed for society from insurers’ use of this information is analysed from the results of a survey and case study conducted in the Republic of Ireland in 2007. Given that the future use of genetic test results by life insurance companies depends heavily on public acceptance, it is important to understand reactions of the public, in relation to their risk perception and acceptance of this particular commercial use of genetic testing. To conclude, the paper briefly explores general international reaction to the risks posed by the use of genetic test results in underwriting life insurance applicants.

Hedgecoe A.. Bioethics and the reinforcement of socio-technical expectations. Soc Stud Sci. 2010 Apr;40(2):163-86.

Over the past few years, considerable interest has been paid to the way in which social expectations (hopes, hypes, fears) about new genomic technologies help shape, and in themselves are shaped by, emerging technologies, regulatory regimes and social concerns. In comparison, little attention has been paid to the role of expectations in related, but non-scientific discourses, such as bioethics. Drawing on a review of publications addressing the ethical issues associated with pharmacogenetics, this paper presents a detailed critique of bioethicists’ contribution to these debates. The review highlights how, almost a decade after bioethical debate around pharmacogenetics started, and in contrast to the profession’s self-perception as a form of regulator, bioethicists still largely restrict themselves to reviews of possible ethical issues raised by this technology, rather than critiquing others’ positions and arguing for specific points of view. In addition the paper argues that bioethicists tend to: accept unquestioningly scientists’ expectations about the development and ethical issues raised by pharmacogenetics; ignore contributions from bioethicists who do question these expectations; and engage in an ethical debate, the boundaries of which have been laid down and defined by academic and industry scientists. The paper concludes by offering some possible explanations for why the bioethical discourse has taken this form.

Abe S, Noguchi Y, Kitamura K.. What do patients with hereditary deafness think of genetic studies?Auris Nasus Larynx. 2010 Aug;37(4):422-6. Epub 2010 Feb 21.

OBJECTIVE: We conducted an attitude survey for patients with hearing loss (HL). The aim of this study was to investigate the opinions of patients or parents of deaf children regarding the deafness gene, genetic testing and a gene related HL. METHOD: A questionnaire was sent to 201 individuals who visited the Department of Otolaryngology, Tokyo Medical and Dental University and who received genetic testing for HL from September 2000 to January 2006. There were 14 questions in the questionnaire that were classified into four topics related to a deafness gene and hereditary HL, genetic testing, outpatient department of medical genetics/genetic counseling, and the results of genetic testing. The study consisted of 140 respondents (70%) of 201 administered surveys. RESULT: Before visiting our department, only 36% of the respondents were aware that a genetic factor was a cause of HL. Despite our explanation of a deafness gene and hereditary HL, 23% of 134 respondents answered that they had not received any such explanation. Furthermore, 14% of the 103 respondents who had answered that they receive the explanation, however, they did not fully understand it. Thirty-nine percent of the respondents made their own decision regarding the genetic testing, whereas 53.5% received the tests upon the advice of a physician or family member. In contrast, 91% of the respondents had a positive attitude towards other future genetic tests. The existence of the genetic outpatient department or genetic counseling has been seldom acknowledged, but upon learning of its availability, nearly one third of the respondents indicated that they would like to receive genetic counseling. Although no respondent had social and/or family problems after being informed that they had a deafness gene mutation, some respondents worried about the result. CONCLUSION: The results of the survey suggested that the vast majority of the respondents were satisfied with genetic testing for HL and that the barriers to take the genetic test were less than expected. However, some respondents have a negative attitude towards genetic testing and counseling. Furthermore, the issue of disclosure may be burdensome to patients.

Donchin, A. REPRODUCTIVE TOURISM AND THE QUEST FOR GLOBAL GENDER JUSTICE. Bioethics. Volume 24 Issue 7, Pages 323 – 332

Reproductive tourism is a manifestation of a larger, more inclusive trend toward globalization of capitalist cultural and material economies. This paper discusses the development of cross-border assisted reproduction within the globalized economy, transnational and local structural processes that influence the trade, social relations intersecting it, and implications for the healthcare systems affected. I focus on prevailing gender structures embedded in the cross-border trade and their intersection with other social and economic structures that reflect and impact globalization. I apply a social connection model of responsibility for unjust outcomes and consider strategies to counter structural injustices embedded in this industry. The concluding section discusses policy reforms and proposals for collaborative action to preclude further injustices and extend full human rights to all.

Rosenthal MS. WOMENS HEALTH ISSUES. Volume: 20, Issue: 4, Pages: 260-265 JUL-AUG 2010

The Suleman octuplet case is the first reported case in which surviving octuplets were born as a result of in vitro fertilization and embryo transfer. In this case, the octuplets were born to an American single mother of six children, who was on public assistance, and who used a sperm donor. This has raised multiple ethical questions, which include the ethical obligations of the health care providers involved, the informed consent process, as well as moral obligations of the mother to her existing children and unborn children. This case analysis provides a clinical ethics and prenatal ethics framework, based on relevant American media and public documents available from January 26, 2009, to January 26, 2010, the period of time in which media scrutiny of this case was most relevant. Although this analysis introduces broader ethical implications, it is not intended as a philosophical discourse regarding the rights of patients to reproduce or the rights of society to place limits on who can and who cannot reproduce: neither is it intended as an in-depth policy review of reproductive technologies. Rather, this analysis focuses on clinical ethics breaches in this particular case, which led to an unintended outcome. The relevant clinical ethical principles, duties, and obligations are identified, with recommendations for a preventative ethics approach in the absence of clear policies that regulate embryo transfer.

Nicholls SG. Knowledge or Understanding? Informed Choice in the Context of Newborn Bloodspot Screening. Public Health Ethics (2010) 3(2): 128-136 published ahead of print June 7, 2010 doi:10.1093/phe/phq016

The UK has a long established programme of newborn bloodspot screening. This operates under a model of informed choice. Understanding is central to the `informed’ element of an informed choice yet it is rarely assessed. To date most research within the context of newborn bloodspot screening has focussed on parental recall of information. In this paper I argue that simplistic assessments of knowledge through recall fail to reflect more complex notions of understanding. In support of this contention I draw on qualitative interviews with parents of children who have undergone newborn bloodspot screening.

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