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The last few years have witnessed an important expansion in the collection and processing of human biological samples and related information data. Biobanks - huge repositories of human biological specimens - have a strategic importance for genetic research, clinical care, and future treatments. However, biobanks are facing many major ethical, legal, and governance challenges, including informed consent, privacy, ownership, commercialization, and harmonization. In addition, forensic DNA-databases raise specific issues. These databases can be an important tool for the police services in their search for the perpetrator of a crime, yet this raises ethical questions with regard to the relationship between liberty and security. This book - a publication of the European Commission funded research project GeneBanC - offers a rich source of material on the ethical, legal, and governance aspects of clinical biobanks, population biobanks, and forensic biobanks. It's research will be of interest to policy makers, academics, and legislators.

Medical law --- Professional ethics. Deontology --- Preservation of organs, tissues, etc --- Biobanks --- Donation of organs, tissues, etc --- Procurement of organs, tissues, etc --- Biological specimens --- Law and legislation --- Moral and ethical aspects --- Government policy --- Academic collection --- Biological Specimen Banks --- Informed Consent. --- 17.023.33 --- biobank (bank voor menselijk lichaamsmateriaal) --- 17.023.33 Biologische doeleinden. Bio-ethiek; bioethiek. Übermensch. Medische deontologie --- Biologische doeleinden. Bio-ethiek; bioethiek. Übermensch. Medische deontologie --- Consent, Informed --- Treatment Refusal --- Mental Competency --- Disclosure --- Therapeutic Misconception --- ethics. --- legislation & jurisprudence. --- biobanque (banque de matériel corporel humain) --- Conferences - Meetings --- Informed Consent --- Organ procurement (Surgery) --- Tissue procurement (Surgery) --- Tissue banks --- Transplantation of organs, tissues, etc. --- Organ preservation (Anatomy) --- Organs (Anatomy) --- Anatomical gifts --- Organ donation --- Tissue donation --- Tissues --- Specimens, Biological --- Biological products --- Bio-banks --- Biological specimen banks --- Biological resource centers --- ethics --- legislation & jurisprudence --- Preservation --- Donation --- Preservation of organs, tissues,etc --- Congresses --- Donation of organs, tissues, etc. --- Procurement of organs, tissues, etc. --- biobanque (banque de matériel corporel humain) --- Biologische doeleinden. Bio-ethiek; bioethiek. Übermensch. Medische deontologie --- Preservation of organs, tissues, etc - Law and legislation - Congresses --- Biobanks - Moral and ethical aspects - Congresses --- Donation of organs, tissues, etc - Law and legislation - Congresses --- Procurement of organs, tissues, etc - Law and legislation - Congresses --- Biological specimens - Law and legislation - Congresses --- Biobanks - Government policy - Congresses --- Droit médical --- Bioéthique --- Droit comparé --- Banques d'organes --- Banques d'échantillons biologiques --- Études comparatives

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Human genetics is not the playground of science alone. Genetics concerns all of us, for we all have DNA, genes, genomes, and chromosomes. Our genes determine partly our appearance and our behaviour, our talents and our health risks.The authors of The Human Recipe use humour to explain what we understand about human genetics. With anecdotes and topical examples, they demonstrate how genetics affects our everyday lives. What if a DNA analysis were to reveal that your biological father must be someone other than the person you’ve been calling “Dad” for years? Does genetics explain why Africans excel in athletics, Asians in gymnastics, and Europeans mainly in sports testing physical strengths? What is the difference between a genetic disease and a contagious illness?The newest developments in human genetics also raise ethical questions and issues which are currently being debated within the genetics community, and the authors do not avoid looking at these either. Should we use genetics to ensure the conception of healthy children or even “designer babies”? Should we identify genetic risks before pregnancy? Should we edit genes in embryos? Can we identify our risk for cancers and can we prevent them? What about privacy in DNA research and forensic databases? Can DNA be stolen, and if so, would this be considered a serious crime? The Human Recipe provides a clever insight into all you might want to know about human genetics in our current society.

Human genome --- Genes --- Genetics. --- Biology --- Embryology --- Mendel's law --- Adaptation (Biology) --- Breeding --- Chromosomes --- Heredity --- Mutation (Biology) --- Variation (Biology) --- Units of heredity --- Units of inheritance --- Molecular genetics --- DNA --- Genomes --- Human chromosomes --- Social aspects. --- menselijk genoom --- genetica (genen) --- genetisch onderzoek --- genetisch patent --- génome humain --- génétique (gènes) --- recherche génétique --- brevet génétique --- Genetica --- Genetisch onderzoek --- Human genetics --- Genetics

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Alhoewel de bioethiek sinds haar ontstaan een multidisciplinair onderzoeksveld is, heeft ze zich vooral ontwikkeld als een normatieve discipline, geankerd in de disciplines van filosofie en theologie. De recente opkomst van empirische studies waarbij bioethische thema's onderzocht worden, plaatst de bioethiek voor fundamentele en methodologische vragen. Wat is immers de plaats van empirisch onderzoek in ethische reflectie en besluitvorming en hoe is een dialoog of integratie tussen empirische en normatieve benaderingen mogelijk? Dit onderzoeksproject heeft vijf concrete onderzoeksdoelstellingen uitgewerkt. Ten eerste stelt dit onderzoeksproject als doel inzicht te krijgen in de aard en evolutie van empirische studies in bioethiek. Ten tweede heeft dit onderzoeksproject als doel om vanuit een historisch perspectief de relaties tussen empirische wetenschappen en bioethiek te onderzoeken. Ten derde wil dit onderzoeksproject onderzoek op welke manier resultaten van empirisch onderzoek geïntegreerd kunnen worden in het ethische besluitvormingsproces. Ten vierde wil dit onderzoeksproject de rol van evidence-based medicine bestuderen voor ethische reflectie. Tenslotte wil dit onderzoeksproject bestuderen hoe in de ethische discussie over dragerschapstests bij minderjarigen de verhouding tussen empirisch onderzoek en normatieve benaderingen interfereert. Dit doctoraatsonderzoek heeft tot zes onderzoeksartikelen geleid, waarvan er reeds vier gepubliceerd zijn of aanvaard voor publicatie. Twee artikelen zijn nog in review. Hierbij volgt de abstract van deze onderzoeksartikelen. 1) Empirical research in bioethics. A quantitative analysis Submitted for review Objectives: The objective of this research is to analyze the evolution and nature of published empirical research in the fields of medical ethics and bioethics. Design: Retrospective quantitative study of nine peer reviewed journals in the field of bioethics and medical ethics ( Bioethics , Cambridge Quarterly of Healthcare Ethics , Hastings Center Report , Journal of Clinical Ethics , Journal of Medical Ethics , Kennedy Institute of Ethics Journal , Nursing Ethics , and Theoretical Medicine and Bioethics ). Results : In total 4029 articles published between 1990 and 2003 were retrieved from the nine bioethical journals under study. Over this period of time, 435 (10.8%) studies used an empirical design. The highest percentage of empirical research articles appeared in Nursing Ethics (n=145, 39.51%), followed by the Journal of Medical Ethics (n=128, 16.75%)and the Journal of Clinical Ethics (n=93, 15.37%). These three journals together account for 84.13% of all empirical research in bioethics published in this period. The results of the chi-square test for two independent samples for the entire dataset indicate that the period 1997–2003 presented a higher number of empirical studies (n=309) than did the period 1990–1996 (n=126). This increase is statistically significant (χ2=49.0264, p<.0001). Most empirical studies employed a quantitative paradigm (64.6%, n=281). The main topic of research was prolongation of life and euthanasia (n=68, e.g., artificial feeding, DNR orders, persistent vegetative state, and euthanasia). Conclusions: We concluded that the proportion of empirical research steadily increased from 5.38% in 1990 to 15.36% in 2003. Without a doubt, the importance of empirical methods in medical ethics and bioethics can only be expected to increase. 2 ) The birth of the empirical turn in bioethics P. Borry, P. Schotsmans, K. Dierickx, Bioethics 2005; 19 (1): 49-71. Since its origin, bioethics has attracted the collaboration of few social scientists, and social scientific methods of gathering empirical data have remained unfamiliar to ethicists. Recently, however, the clouded relations between the empirical and normative perspectives on bioethics appear to be changing. Three reasons explain why there was no easy and consistent input of empirical evidenceinto bioethics. Firstly, interdisciplinary dialogue runs the risk of communication problems and divergent objectives. Secondly, the social sciences were absent partners since the beginning of bioethics. Thirdly, the meta-ethical distinction between ‘is’ and ‘ought’ created a ‘natural’ border between the disciplines. Now, bioethics tends to accommodate more empirical research. Three hypotheses explain this emergence. Firstly, dissatisfaction with a foundationalist interpretation of applied ethics created a stimulus to incorporate empirical research in bioethics. Secondly, clinical ethicists became engaged in empirical research due to their strong integration in the medical setting. Thirdly, the rise of the evidence-based paradigm had an influence on the practice of bioethics. However, a problematic relationship cannot simply and easily evolve into a perfect interaction. A new and positive climate for empirical approaches has arisen, but the original difficulties have not disappeared. 3 ) What is the role of empirical research in ethical reflection and decision-making? An ethical analysis P. Borry, P. Schotsmans, K. Dierickx, Med Health Care Phil 2004; 7 (1): 41-53. The field of bioethics isincreasingly coming into contact with empirical research findings. In this article, we ask what role empirical research can play in the process of ethical clarification and decision-making. Ethical reflection almost always proceeds in three steps: the description of the moral question, the assessment of the moral question and the evaluation of the decision-making. Empirical research can contribute at each step of this process. In the description of the moral object, first of all, empirical research has a role to play in the description of morally relevant facts. It plays a role in answering the "reality-revealing questions" (what, why, how, who, where and when), in assessing the consequences and in proposing alternative courses of action. Secondly, empirical research plays a role in assessing the moral question. It must be acknowledged that research possesses "the normative power of the factual", which can also become normative by suppressing other norms. However, inductive normativity should always be balanced out by a deductive form of normativity. Thirdly, empirical research also has a role to play in evaluating the decision-making process. It can rule out certain moral choices by pointing out the occurrence of certain unexpected consequences or effects. It can also be useful, however, as a sociology of bioethics in which the discipline of bioethics itself becomes an object of research. 4 ) Evidence-based medicine and its role in ethical decision-making P. Borry, P. Schotsmans, K. Dierickx, J Eval Clin Pract (accepted). The recent emergence of evidence-based medicine (EBM) presents medical ethics with the challenge of analyzing what is the current best medical evidence in ethical decision-making. This article concludes that the use of the best available, most recently published research findings is a primary moral obligation. However, this does not automatically mean that the use of these research findings will lead to better ethical decision-making. Research data can be distorted by methodological failings in the design and reporting of experiments, or by technical and commercial bias. Moreover, the introduction of norms, values, principles and ethical theories can lead to other choices than those proposed by empirical research findings. Ethical decision-making must be informed and legitimated by the best available medical research. Nevertheless, ethical decision-making is still primarily a choice based on values and norms. 5) Attitudes towards carrier testing in minors: a systematic review P. Borry, J.P. Fryns, P. Schotsmans, K. Dierickx, Genet Couns (accepted). Objectives: The objective of this article is to review the attitudes of the different stakeholders (minors, healthcare professionals, parents and relatives of affected individuals) towards carrier testing in minors. Design: The databases Pubmed, Google Scholar, Psychinfo, Biological Abstracts, Francis,Anthropological Index online, Web of Science, and Sociological Abstracts were searched using key words for the period 1990-2004. Studies were included if they were published in a peer reviewed journal in English and described the attitudes of minors, parents or healthcare professionals towards carrier testing in minors in a family context. The results were presented in a summary form. Results: In total 20 relevant studies were retrieved (2 studies reported the attitudes of two stakeholders). Only one study reported the attitudes of adolescents, two studies reported the attitudes of adults who had undergone carrier testing in childhood. In total six studies have been retrieved discussing the parental attitudes towards carrier testing in their children. Over all studies, most parents showed interest in detecting their children’s carrier status and responded they wanted their child tested before the age of majority; some parents even before 12 years. Eight studies were retrieved that reported the attitudes of relatives of affected individuals. Most were in favor of carrier testing before 18 years. Conclusion: The studies retrieved suggest that most parents are interested in the carrier status of their children and want their children to be tested before they reach legal majority (and some even in childhood). This can lead to tensions between parents and healthcare professionals regarding carrier testing in minors. Guidelines of healthcare professionals advise to defer carrier testing on the grounds that children should be able to decide for themselves later in life to request a carrier test or not. 6) Carrier testing in minors: a systematic review of guidelines and position papers Submitted for review. Objectives: The objective of this article is to review all published normative ethical and clinical guidelines concerning the genetic carrier testing of minors. Design: The databases Pubmed, Philosopher’s Index, Biological Abstracts, Web of Science, and Google Scholar were searched using keywords relating to the carrier testing of children. We also searched the websites of the national bioethics committees indexed on the websites of WHO and the German Reference Center for Ethics in the Life Sciences, the Human Genetics Societies of various nations indexed on the website of the International Federation of Human Genetics Societies and related links, and the national medical associations indexed on the website of the World Medical Association. Results: We retrieved 14 guidelines emanating from 24 different groups. All guidelines advanced the following preferences: (1) carrier testing should not be performed in children, and (2) testing should be deferred until the child can give proper informed consent to be tested. The guidelines varied in three areas: (a) the role of genetic services in ensuring that children are informed about their carrier status and associated risks when they are older; (b) exceptions to the general rule of withholding or deferring carrier testing; and (c) the communication of incidentally discovered carrier status. Conclusion: In the absence of compelling reasons, carrier testing of a child can reasonably be deferred until the child has the intellectual capacity needed to discern if and when to be tested. Although the multidisciplinary mode of inquiry of bioethics and the multiplicity of disciplines actively involved since the beginnings of the field, bioethics developed in its first decade mainly as a normative discipline, anchored in moral philosophy and moral theology. The actual rise of empirical studies in bioethics questions on the one hand at a fundamental level what place bioethics will reserve for empirical approaches in its field and on the other hand at a methodological level what a connection or integration between empirical and normative approaches can be attained in practice. This research project will be focused around five specific research objectives. The first objective of this research is to analyze the number and nature of empirical studies published in the field of bioethics. The second objective is to analyze the reasons for the limited interaction between empirical and normative approaches in the field of bioethics in the past and to analyzingcatalyzing factors that recently led to the emergence of empirical studies in the field of bioethics. The third objective is to analyze what contribution empirical research in bioethics might make to the different steps in the ethical clarification and decision-making process. The fourth objective is to analyze the role of medical evidence in the process of ethical reflection. The fifth objective is to analyze how in the ethical discussion about the case of carrier testing in minors empirical and normative approaches are interacting. In the results part, this research project has led to six manuscripts that have been submitted to peer reviewed international journals. At this moment 4 publications have been accepted and 2 are still in review. We present the abstracts of these publications. 1) Empirical research in bioethics. A quantitative analysis Submitted for review Objectives: The objective of this research is to analyze the evolution and nature of published empirical research in the fields of medical ethics and bioethics. Design: Retrospective quantitative study of nine peer reviewed journals in the field of bioethics and medical ethics ( Bioethics , Cambridge Quarterly of Healthcare Ethics , Hastings Center Report , Journal of Clinical Ethics , Journal of Medical Ethics , Kennedy Institute of Ethics Journal , Nursing Ethics , and Theoretical Medicine and Bioethics ). Results : In total 4029 articles published between 1990 and 2003 were retrieved from the nine bioethical journals under study. Over this period of time, 435 (10.8%) studies used an empirical design. The highest percentage of empirical research articles appeared in Nursing Ethics (n=145, 39.51%), followed by the Journal of Medical Ethics (n=128, 16.75%) and the Journal of Clinical Ethics (n=93, 15.37%). These three journals together account for 84.13% of all empirical research in bioethics published in this period. The results of the chi-square test for two independent samples for the entire dataset indicate that the period 1997–2003 presented a higher number of empirical studies (n=309) than did the period 1990–1996 (n=126). This increase is statistically significant (χ2=49.0264, p<.0001). Most empirical studies employed a quantitative paradigm (64.6%, n=281). The main topic of research was prolongation of life and euthanasia(n=68, e.g., artificial feeding, DNR orders, persistent vegetative state, and euthanasia). Conclusions: We concluded that the proportion of empirical research steadily increased from 5.38% in 1990 to 15.36% in 2003. Without a doubt, the importance of empirical methods in medical ethics and bioethics can only be expected to increase. 2 ) The birth of the empirical turn in bioethics P. Borry, P. Schotsmans, K. Dierickx, Bioethics 2005; 19 (1): 49-71. Since its origin, bioethics has attracted the collaboration of few social scientists, and social scientific methods of gathering empirical data have remained unfamiliar to ethicists. Recently, however, the clouded relations between the empirical and normative perspectives on bioethics appear to be changing. Three reasons explain why there was no easy and consistent input of empirical evidence into bioethics. Firstly, interdisciplinary dialogue runs the risk of communication problems and divergent objectives. Secondly, the social sciences were absent partners since the beginning of bioethics. Thirdly, the meta-ethical distinction between ‘is’ and ‘ought’ created a ‘natural’ border between the disciplines. Now, bioethics tends to accommodate more empirical research. Three hypotheses explain this emergence. Firstly, dissatisfaction with a foundationalist interpretation of applied ethics created a stimulus to incorporate empirical research in bioethics. Secondly, clinical ethicists became engaged in empirical research due to their strong integration in the medical setting. Thirdly, the rise of the evidence-based paradigm had an influence on the practice of bioethics. However, a problematic relationship cannot simply and easily evolve into a perfect interaction. A new and positive climate for empirical approaches has arisen, but the original difficulties have not disappeared. 3 ) What is the role of empirical research in ethical reflection and decision-making? An ethical analysis P. Borry, P. Schotsmans, K. Dierickx, Med Health Care Phil 2004; 7 (1): 41-53. The field of bioethics is increasingly coming into contact with empirical research findings. In this article, we ask what role empirical research can play in the process of ethical clarification and decision-making. Ethical reflection almost always proceeds in three steps: the description of the moral question, the assessment of the moral question and the evaluation

Academic collection --- 17.023.33 --- 241.63*5 --- Biologische doeleinden. Bio-ethiek; bioethiek. Übermensch. Medische deontologie --- Theologische ethiek: bio-ethiek (bioethiek); genetische experimenten; transplantatie; eugenetica --- Theses --- 241.63*5 Theologische ethiek: bio-ethiek (bioethiek); genetische experimenten; transplantatie; eugenetica --- 17.023.33 Biologische doeleinden. Bio-ethiek; bioethiek. Übermensch. Medische deontologie --- Bioethics --- Normativity (Ethics) --- Empiricism --- Bioéthique --- Norme (Morale) --- Empirisme

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Professional ethics. Deontology --- Medical law --- Estonia

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Professional ethics. Deontology --- Medical law --- Cyprus