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  1. Reforming Informed Consent: On Disability and Genetic Counseling.Elizabeth Dietz & Joel Michael Reynolds - 2023 - In Michael J. Deem, Emily Farrow & Robin Grubs (eds.), The Oxford Handbook of Genetic Counseling. Oxford University Press USA.
    Informed consent is a central concept for empirical and theoretical research concerning pregnancy management decisions and is often taken to be one of the more fundamental goals of the profession of genetic counseling. Tellingly, this concept has been seen by disability communities as salutary, despite longstanding critiques made by disability activists, advocates, and scholars concerning practices involved in genetic counseling more generally. In this chapter, we show that the widespread faith in informed consent is misleading and can be detrimental to (...)
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  2. A practical checklist for return of results from genomic research in the European context.Danya F. Vears, Signe Mežinska, Nina Hallowell, Heidi Beate Hallowell, Bridget Ellul, Therese Haugdahl Nøst, , Berge Solberg, Angeliki Kerasidou, Shona M. Kerr, Michaela Th Mayrhofer, Elizabeth Ormondroyd, Birgitte Wirum Sand & Isabelle Budin-Ljøsne - 2023 - European Journal of Human Genetics 1:1-9.
    An increasing number of European research projects return, or plan to return, individual genomic research results (IRR) to participants. While data access is a data subject’s right under the General Data Protection Regulation (GDPR), and many legal and ethical guidelines allow or require participants to receive personal data generated in research, the practice of returning results is not straightforward and raises several practical and ethical issues. Existing guidelines focusing on return of IRR are mostly project-specific, only discuss which results to (...)
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  3. Davidson on Pure Intending: A Non-Reductionist Judgement-Dependent Account.Ali Hossein Khani - 2022 - Dialogue 61 (2):369-391.
    RésuméJe soutiendrai que la façon dont Davidson rend compte de l'intention pure peut être comprise comme une analyse de l'intention comme étant relative à un jugement dans une perspective en première personne. Selon Davidson, avoir la pure intention de faire A, c'est formuler un jugement tout bien considéré qu'il est désirable de faire A. Dans cette analyse anti-réductionniste, l'intention est traitée comme un état irréductible du sujet. J’établirai une comparaison entre cette analyse et celle de Wright et je montrerai comment (...)
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  4. Privacy, autonomy and direct-to-consumer genetic testing: a response to Vayena.Kyle van Oosterum - 2022 - Journal of Medical Ethics 48 (10):774-775.
    In Vayena’s article, ‘direct-to-consumer (DTC) genomics on the scales of autonomy’, she claims that there may be a strong autonomy-based argument for permitting DTC genomic services. In this response, I point out how the diminishment of one’s genetic privacy can cause a relevant autonomy-related harm which must be balanced against the autonomy-related gains DTC services provide. By drawing on conceptual connections between privacy and the Razian conception of autonomy, I show that DTC genetic testing may decrease the range of valuable (...)
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  5. Ethical issues in genomics research on neurodevelopmental disorders: a critical interpretive review.Signe Mezinska, L. Gallagher, M. Verbrugge & E. M. Bunnik - 2021 - Human Genomics 16 (15).
    Background Genomic research on neurodevelopmental disorders (NDDs), particularly involving minors, combines and amplifies existing research ethics issues for biomedical research. We performed a review of the literature on the ethical issues associated with genomic research involving children affected by NDDs as an aid to researchers to better anticipate and address ethical concerns. Results Qualitative thematic analysis of the included articles revealed themes in three main areas: research design and ethics review, inclusion of research participants, and communication of research results. Ethical (...)
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  6. Access to Prenatal Testing and Ethically Informed Counselling in Germany, Poland and Russia.Marcin Orzechowski, Cristian Timmermann, Katarzyna Woniak, Oxana Kosenko, Galina Lvovna Mikirtichan, Alexandr Zinovievich Lichtshangof & Florian Steger - 2021 - Journal of Personalized Medicine 11 (9):937.
    The development of new methods in the field of prenatal testing leads to an expansion of information that needs to be provided to expectant mothers. The aim of this research is to explore opinions and attitudes of gynecologists in Germany, Poland and Russia towards access to prenatal testing and diagnostics in these countries. Semi-structured interviews were conducted with n = 18 gynecologists in Germany, Poland and Russia. The interviews were analyzed using the methods of content analysis and thematic analysis. Visible (...)
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  7. Can ‘eugenics’ be defended?Walter Veit, J. Anomaly, N. Agar, P. Singer, D. Fleischman & F. Minerva - 2021 - Bioethics Review 39 (1):60–67.
    In recent years, bioethical discourse around the topic of ‘genetic enhancement’ has become increasingly politicized. We fear there is too much focus on the semantic question of whether we should call particular practices and emerging bio-technologies such as CRISPR ‘eugenics’, rather than the more important question of how we should view them from the perspective of ethics and policy. Here, we address the question of whether ‘eugenics’ can be defended and how proponents and critics of enhancement should engage with each (...)
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  8. The trust game CRISPR for human germline editing unsettles scientists and society.Matthias Braun & Darian Meacham - 2019 - EMBO Reports 20 (2).
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  9. Precision Medicine and Big Data: The Application of an Ethics Framework for Big Data in Health and Research.G. Owen Schaefer, E. Shyong Tai & Shirley Sun - 2019 - Asian Bioethics Review 11 (3):275-288.
    As opposed to a ‘one size fits all’ approach, precision medicine uses relevant biological, medical, behavioural and environmental information about a person to further personalize their healthcare. This could mean better prediction of someone’s disease risk and more effective diagnosis and treatment if they have a condition. Big data allows for far more precision and tailoring than was ever before possible by linking together diverse datasets to reveal hitherto-unknown correlations and causal pathways. But it also raises ethical issues relating to (...)
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  10. Should Parents Genetically Engineer their Children?Walter Veit - 2019 - Psychology Today.
    Imagine a world where everyone is healthy, intelligent, long living and happy. Intuitively this seems wonderful, albeit unrealistic. However, recent scientific developments in genetic engineering, namely CRISPR/Cas bring the question into public discourse, how the genetic enhancement of humans should be evaluated morally.
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  11. A Neglected Ethical Issue in Citizen Science and DIY Biology.Lucie White - 2019 - American Journal of Bioethics 19 (8):46-48.
    Andrea Wiggins and John Wilbanks’ article (2019) presents us with a welcome overview of the neglected, novel ethical issues raised by the advent of citizen science in health and biomedical contexts. This contribution takes a rather different approach, focusing on a very specific (yet also overlooked) problem in this context - the ethical implications of self-administered genetic testing. This problem, however, is particularly illustrative of the “ethics gap” between traditional medical settings and new public-driven scientific practices, emphasized by Wiggins and (...)
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  12. Well-being, Opportunity, and Selecting for Disability.Andrew Schroeder - 2018 - Journal of Ethics and Social Philosophy 14 (1).
    In this paper I look at the much-discussed case of disabled parents seeking to conceive disabled children. I argue that the permissibility of selecting for disability does not depend on the precise impact the disability will have on the child’s wellbeing. I then turn to an alternative analysis, which argues that the permissibility of selecting for disability depends on the impact that disability will have on the child’s future opportunities. Nearly all bioethicists who have approached the issue in this way (...)
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  13. Personalised Medicine, Individual Choice and the Common Good.Britta van Beers, Sigrid Sterckx & Donna Dickenson (eds.) - 2018 - Cambridge: Cambridge University Press.
    This is a volume of twelve essays concerning the fundamental tension in personalised medicine between individual choice and the common good.
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  14. Procreative Beneficence and Genetic Enhancement.Walter Veit - 2018 - Kriterion - Journal of Philosophy 32 (1):75-92.
    Imagine a world where everyone is healthy, intelligent, long living and happy. Intuitively this seems wonderful albeit unrealistic. However, recent scienti c breakthroughs in genetic engineering, namely CRISPR/Cas bring the question into public discourse, how the genetic enhancement of humans should be evaluated morally. In 2001, when preimplantation genetic diagnosis (PGD) and in vitro fertilisation (IVF), enabled parents to select between multiple embryos, Julian Savulescu introduced the principle of procreative bene cence (PPB), stating that parents have the obligations to choose (...)
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  15. The Eugenic Mind Project.Robert A. Wilson - 2018 - Cambridge, MA: MIT Press.
    The Eugenic Mind Project is a wide-ranging, philosophical book that explores and critiques both past and present eugenic thinking, drawing on the author’s intimate knowledge of eugenics in North America and his previous work on the cognitive, biological, and social sciences, the fragile sciences. Informed by the perspectives of Canadian eugenics survivors in the province of Alberta, The Eugenic Mind Project recounts the history of eugenics and the thinking that drove it, and critically engages contemporary manifestations of eugenic thought, newgenics. (...)
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  16. Contemporary Forms of Eugenics.Robert A. Wilson - 2017 - eLS Wiley Online.
    Eugenics is commonly thought of as having endured as science and social movement only until 1945. With the advance of both reproductive and enhancement technologies, however, concern has arisen that eugenics has resurfaced in new forms. In particular, the eugenic potential of the Human Genome Project led to talk of the rise of ‘newgenics’ and of a backdoor to eugenics. This article focuses on such concerns deriving from the practice of prenatal screening and technologies that increase our ability to generate (...)
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  17. Eugenics in Philosophy.Robert A. Wilson - 2017 - Oxford Bibliographies Online.
    Annotated bibliography on eugenics and philosophy.
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  18. Ethical qualms about genetic prognosis.Donna Dickenson - 2016 - Canadian Medical Association Journal 188 (6):1-2.
    The debate about direct-to-consumer genetic testing has centred on whether consumers are the best judges of their own clinical care. Inthis article, I also examine whether the science of personalized medicine is really as advanced as its proponents claim, and how the availability of genetic markers affects decisions on who gets and does not get medical treatment.
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  19. When Should Genome Researchers Disclose Misattributed Pahentage?Amulya Mandava, Joseph Millum & Benjamin E. Berkman - 2015 - Hastings Center Report 45 (4):28-36.
    Research studies increasingly use genomic sequencing to draw inferences based on comparisons between the genetic data of a set of purportedly related individuals. As use of this method progresses, it will become much more common to discover that the assumed biological relationships between the individuals are mistaken. Consequently, researchers will have to grapple with decisions about whether to return incidental findings of misattributed parentage on a much larger scale than ever before. In this paper we provide an extended argument for (...)
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  20. The Return of Lombroso? Ethical Aspects of Preventive Forensic Screening.Christian Munthe & Susanna Radovic - 2015 - Public Health Ethics 8 (3):270-283.
    The vision of legendary criminologist Cesare Lombroso to use scientific theories of individual causes of crime as a basis for screening and prevention programmes targeting individuals at risk for future criminal behaviour has resurfaced, following advances in genetics, neuroscience and psychiatric epidemiology. This article analyses this idea and maps its ethical implications from a public health ethical standpoint. Twenty-seven variants of the new Lombrosian vision of forensic screening and prevention are distinguished, and some scientific and technical limitations are noted. Some (...)
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  21. Military Genomic Testing: Proportionality, Expected Benefits, and the Connection between Genotypes and Phenotypes.Charles H. Pence - 2015 - Journal of Law and the Biosciences 2 (1):85-91.
    Mehlman and Li offer a framework for approaching the bioethical issues raised by the military use of genomics that is compellingly grounded in both the contemporary civilian and military ethics of medical research, arguing that military commanders must be bound by the two principles of paternal- ism and proportionality. I agree fully. But I argue here that this is a much higher bar than we may fully realize. Just as the principle of proportionality relies upon a thorough assessment of harms (...)
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  22. The Preference Toward Identified Victims and Rescue Duties.Tomasz Żuradzki - 2015 - American Journal of Bioethics 15 (2):25-27.
    Jeremy R. Garrett claims that the nature and scope of our rescue duties cannot be properly understood and addressed without reference to social context or institutional background conditions. In my comment I focus not on social or institutional but on psychological background conditions that are also necessary for the conceptualization of rescue cases. These additional conditions are of crucial importance since an entire paradigm of “rescue medicine” is founded, as Garret notices, on the powerful and immediate “impulse to rescue” (Garrett (...)
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  23. Testing times for the consumer genetics revolution.Donna Dickenson - 2014 - The New Scientist 221 (2251):26-27.
    With the highest profile seller of $99 genetic tests under fire, will public trust in personalised medicine suffer?
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  24. Response to Tomasz Zuradzki's Preimplantation genetic diagnosis and rational choice under risk or uncertainty.Xavier Symons - 2014 - Journal of Medical Ethics 40 (11):779-779.
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  25. A situation of ethical limbo and preimplantation genetic diagnosis.Tomasz Żuradzki - 2014 - Journal of Medical Ethics 40 (11):780-781.
    In my previous paper I argued that if in vitro fertilization (IVF) is legal and practiced there is no moral ground to object to legalization of preimplantation genetic diagnosis (PGD). My opponent raises an objection that my paper “fails to address the ethical argumentation of one key opponent of IVF – the Catholic Church”. In this reply I show that her/his thesis that embryos created during IVF are in ‘ethical limbo’ and “fall outside the moral universe of Christian ethics” does (...)
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  26. Preimplantation genetic diagnosis and rational choice under risk or uncertainty.Tomasz Żuradzki - 2014 - Journal of Medical Ethics 40 (11):774-778.
    In this paper I present an argument in favour of a parental duty to use preimplantation genetic diagnosis (PGD). I argue that if embryos created in vitro were able to decide for themselves in a rational manner, they would sometimes choose PGD as a method of selection. Couples, therefore, should respect their hypothetical choices on a principle similar to that of patient autonomy. My thesis shows that no matter which moral doctrine couples subscribe to, they ought to conduct the PGD (...)
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  27. It's All About Me.Donna Dickenson - 2013 - New Scientist 2934.
    The growth of personalised medicine threatens the communal approach that has brought our biggest health gains.
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  28. Me Medicine vs. We Medicine: Reclaiming Biotechnology for the Common Good.Donna Dickenson - 2013 - New York, USA: Columbia University Press.
    Even in the increasingly individualized American medical system, advocates of 'personalized medicine' claim that healthcare isn't individualized enough. With the additional glamour of new biotechnologies such as genetic testing and pharmacogenetics behind it, 'Me Medicine'-- personalized or stratified medicine-- appears to its advocates as the inevitable and desirable way of the future. Drawing on an extensive evidence base, this book examines whether these claims are justified. It goes on to examine an alternative tradition rooted in communitarian ideals, that of the (...)
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  29. Personalized genetic medicine: present reality, future prospects.Donna Dickenson - 2013 - In Sheldon Krimsky & Jeremy Gruber (eds.), Biotechnology in Our Lives. Skyhorse Publishing.
    The soaring promises made by personalized genetic medicine advocates are probably loftier than those in any other medical or scientific realm today. Are they justified?
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  30. Social Epigenetics and Equality of Opportunity.Michele Loi, Lorenzo Del Savio & Elia Stupka - 2013 - Public Health Ethics 6 (2):142-153.
    Recent epidemiological reports of associations between socioeconomic status and epigenetic markers that predict vulnerability to diseases are bringing to light substantial biological effects of social inequalities. Here, we start the discussion of the moral consequences of these findings. We firstly highlight their explanatory importance in the context of the research program on the Developmental Origins of Health and Disease (DOHaD) and the social determinants of health. In the second section, we review some theories of the moral status of health inequalities. (...)
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  31. Ślepy traf a preimplantacyjna diagnostyka genetyczna.Tomasz Żuradzki - 2013 - Przeglad Filozoficzny - Nowa Seria 85 (1):31-46.
    Wedle Stanowiska Komitetu Bioetyki przy Prezydium PAN nr 2/2012 z dnia 8. czerwca 2012 r. w sprawie preimplantacyjnej diagnostyki genetycznej (PDG) jednym z głównych problemów wiążących się z prawnym uregulowaniem PDG jest nierozstrzygalność sporu na temat statusu moralnego ludzkich zarodków. Stanowisko i zgłoszone do niego zdania odrębne stwierdzają, że ci, którzy uznają, że wczesne zarodki mają pełny status moralny, nie mogą się zgodzić na diagnostykę preimplantacyjną. W artykule pokazuję, że przyjęcie nawet skrajnie konserwatywnego poglądu na status wczesnych embrionów ludzkich, czyli (...)
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  32. Cystic fibrosis carrier screening in Veneto (Italy): an ethical analysis. [REVIEW]Tommaso Bruni, Matteo Mameli, Gabriella Pravettoni & Giovanni Boniolo - 2012 - Medicine, Health Care and Philosophy 15 (3):321-328.
    A recent study by Castellani et al. (JAMA 302(23):2573–2579, 2009) describes the population-level effects of the choices of individuals who underwent molecular carrier screening for cystic fibrosis (CF) in Veneto, in the northeastern part of Italy, between 1993 and 2007. We discuss some of the ethical issues raised by the policies and individual choices that are the subject of this study. In particular, (1) we discuss the ethical issues raised by the acquisition of genetic information through antenatal carrier testing; (2) (...)
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  33. Niepewność na temat moralnego statusu embrionów ludzkich a preimplantacyjna diagnostyka genetyczna.Tomasz Żuradzki - 2012 - Diametros 34:179-189.
    W tekście omawiam tę część internetowej dyskusji, przeprowadzonej w listopadzie 2012 r. na stronie Polskiego Towarzystwa Bioetycznego, która dotyczyła niepewności na temat moralnego statusu embrionów ludzkich. W trakcie dyskusji PTB na temat Stanowiska Komitetu Bioetyki przy Prezydium PAN w sprawie preimplantacyjnej diagnostyki genetycznej (PDG) pojawił się następujący argument: skoro spór o moralny status embrionu jest nierozstrzygalny, to powinniśmy opowiedzieć się przeciwko moralnej dopuszczalności wykonywania PDG na embrionach, a także przeciwko prawnej dopuszczalności tego rodzaju diagnostyki. W tekście omawiam tezy Stanowiska i (...)
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  34. Implants and Ethnocide: learning from the Cochlear implant controversy.Robert Sparrow - 2010 - Disability and Society 25 (4):455-466.
    This paper uses the fictional case of the ‘Babel fish’ to explore and illustrate the issues involved in the controversy about the use of cochlear implants in prelinguistically deaf children. Analysis of this controversy suggests that the development of genetic tests for deafness poses a serious threat to the continued flourishing of Deaf culture. I argue that the relationships between Deaf and hearing cultures that are revealed and constructed in debates about genetic testing are themselves deserving of ethical evaluation. Making (...)
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  35. The Value of Information and the Ethics of Personal-Genomic Screening.Peter H. Schwartz - 2009 - American Journal of Bioethics 9 (4):26-27.
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  36. Empirical Analysis of Current Approaches to Incidental Findings.Frances Lawrenz & Suzanne Sobotka - 2008 - Journal of Law, Medicine and Ethics 36 (2):249-255.
    This paper presents results found through searching publicly available U.S. data sources for information about how to handle incidental fndings (IF) in human subjects research, especially in genetics and genomics research, neuroimaging research, and CT colonography research. We searched the Web sites of 14 federal agencies, 22 professional societies, and 100 universities, as well as used the search engine Google for actual consent forms that had been posted on the Internet. Our analysis of these documents showed that there is very (...)
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  37. Genes, identity, and the expressivist critique.Robert Sparrow - 2008 - In Loane Skene and Janna Thompson (ed.), The Sorting Society. Cambridge University Press. pp. 111-132..
    In this paper, I explore the “expressivist critique” of the use of prenatal testing to select against the birth of persons with impairments. I begin by setting out the expressivist critique and then highlighting, through an investigation of an influential objection to this critique, the ways in which both critics and proponents of the use of technologies of genetic selection negotiate a difficult set of dilemmas surrounding the relationship between genes and identity. I suggest that we may be able to (...)
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  38. Challenges for Corporate Ethics in Marketing Genetic Tests.Bryn Williams-Jones & Vural Ozdemir - 2008 - Journal of Business Ethics 77 (1):33-44.
    Public discussions of ethical issues related to the biotechnology industry tend to treat "biotechnology" as a single, undifferentiated technology. Similarly, the pros and cons associated with this entire sector tend to get lumped together, such that individuals and groups often situate themselves as either "pro-" or "anti-" biotechnology as a whole. But different biotechnologies and their particular application context pose very different challenges for ethical corporate decision-making. Even within a single product category, different specialty products can pose strikingly different ethical (...)
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  39. Silence about Screening.Peter H. Schwartz - 2007 - American Journal of Bioethics 7 (7):46-48.
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  40. Genetic privacy: a challenge to medico-legal norms: G Laurie. Cambridge University Press, 2002, 50.00 (hbk), pp 335. ISBN 0521660270. [REVIEW]D. Dickenson - 2003 - Journal of Medical Ethics 29 (6):373-374.
    Review of Graeme Laurie, Genetic Privacy.
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  41. Ethical issues in pre-cancer testing: the parallel with Huntington's disease.Donna L. Dickenson - 2002 - In Bill Fulford, Donna Dickenson & Thomas Murray Murray (eds.), Healthcare Ethics and Human Values: An Introductory Text with Readings and Case Studies. Oxford: Blackwell. pp. 97-100.
    This chapter considers ethical issues involved in genetic testing and screening for susceptibility to various forms of cancer.
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  42. Can children and young people consent to be tested for adult onset genetic disorders.Donna Dickenson - 1999 - British Medical Journal 318:1063-1066.
    What should we do about children and young people who want to be tested for incurable, adult onset, genetic disorders? In particular, what should a general practitioner do if he or she believes the young person is competent to decide, but the regional genetics unit refuses to test anyone under 18? In this article I discuss such a case (drawn from actual practice, but anonymised), and consider the arguments for and against allowing the young person to be tested in terms (...)
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