New Bioethics-A Multidisciplinary Journal of Biotechnology and the Body最新文献

{"title":"The New Social Contract for Genomics.","authors":"Edward Hockings","doi":"10.1080/20502877.2022.2139621","DOIUrl":"https://doi.org/10.1080/20502877.2022.2139621","url":null,"abstract":"<p><p>The belief that genomics requires rethinking the 'social contract' to realize its potential has received backing from leading figures within bioethics. The case for a new social contract is anchored in notions of solidarity, altruism or the common good. But national genome sequencing is playing out against a backdrop of greatly increased involvement, and investment, of governments in their life science sectors - creating a sort of international race to drive innovation, stimulate growth, and create the most competitive life science sectors. Recent developments in the UK suggest this agenda is detrimental to openness and transparency, as well as independent oversight, and meaningful public consultation. These aspects of governance, I argue, should be reconceived as part of the requirements of good governance. Further, a new social contract should involve a commitment by government, and industry, to educate the public about life science - and should be extended to life science more generally.</p>","PeriodicalId":43760,"journal":{"name":"New Bioethics-A Multidisciplinary Journal of Biotechnology and the Body","volume":"29 1","pages":"10-23"},"PeriodicalIF":1.2,"publicationDate":"2023-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10833578","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Ethical Considerations in Research with Genomic Data.","authors":"Rachel Horton,&nbsp;Anneke Lucassen","doi":"10.1080/20502877.2022.2060590","DOIUrl":"https://doi.org/10.1080/20502877.2022.2060590","url":null,"abstract":"<p><p>Our ability to generate genomic data is currently well ahead of our ability to understand what they mean, raising challenges about how best to engage with them. This article considers ethical aspects of work with such data, focussing on research contexts that are intertwined with clinical care. We discuss the identifying nature of genomic data, the medical information intrinsic within them, and their linking of people within a biological family. We go on to consider what this means for consent, the importance of thoughtful sharing of genomic data, the challenge of constructing meaningful findings, and the legacy of unequal representation in genomic datasets. We argue that the ongoing success of genomic data research relies on public trust in the enterprise: to justify this trust, we need to ensure robust stewarding, and wide engagement about the ethical issues inherent in such practices.</p>","PeriodicalId":43760,"journal":{"name":"New Bioethics-A Multidisciplinary Journal of Biotechnology and the Body","volume":"29 1","pages":"37-51"},"PeriodicalIF":1.2,"publicationDate":"2023-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9413311","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Psychological and Ethical Challenges of Introducing Whole Genome Sequencing into Routine Newborn Screening: Lessons Learned from Existing Newborn Screening.","authors":"Fiona Ulph,&nbsp;Rebecca Bennett","doi":"10.1080/20502877.2022.2124582","DOIUrl":"https://doi.org/10.1080/20502877.2022.2124582","url":null,"abstract":"<p><p>As a psychologist and an ethicist, we have explored empirically newborn screening consent and communication processes. In this paper we consider the impact on families if newborn screening uses whole genome sequencing. We frame this within the World Health Organization's definition of health and contend that proposals to use whole genome sequencing in newborn screening take into account the ethical, practical and psychological impact of such screening. We argue that the important psychological processes occurring in the neonatal phase necessitate a clear justification that providing risk information at this stage provides a health benefit. We illustrate how research on current newborn screening can inform whole genome sequencing debates, whilst highlighting important gaps. Obtaining explicit, voluntary, and sufficiently informed consent for newborn screening is challenging, however we stress that such consent is ethically and legally appropriate and psychologically and practically important. We conclude by outling how this might be done.</p>","PeriodicalId":43760,"journal":{"name":"New Bioethics-A Multidisciplinary Journal of Biotechnology and the Body","volume":"29 1","pages":"52-74"},"PeriodicalIF":1.2,"publicationDate":"2023-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10840450","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Genomics is here: what can we do with it, and what ethical issues has it brought along for the ride?","authors":"Chris Willmott,&nbsp;John Bryant","doi":"10.1080/20502877.2023.2180839","DOIUrl":"https://doi.org/10.1080/20502877.2023.2180839","url":null,"abstract":"2023 marks twenty years since the formal completion of the Human Genome Project (HGP). As many readers will know, this monumental international collaboration to determine the sequence of all three billion ‘letters’ (bases) in the human genome had taken legions of scientists more than a decade to achieve. Much was made of the power of this database to revolutionize our understanding of human biology and to herald the transforming potential of genetics for tailored medical treatments. Editorials at the time declared that the Genomic Era had arrived (e.g. Guttmacher and Collins 2003, Roses 2003). The phenomenal technical achievements of the HGP cannot be overstated. However, there was more than a hint of hype in the marketing of the project, not least in justifying the three billion dollars it was estimated to have cost. Between them, the official HGP and the rival Celera project had managed to produce completed reference genomes from a small collection of individuals, fewer than a dozen in total. Yet, much of the power of genomics comes not from the aspects of our DNAwe sharewith others (and those reference sequences), but from the differences that make us distinct, estimated to be roughly one base in every thousand. The available methodologies of the time simply could not deliver the types of personalised analysis promised in an economically viable and timely fashion.","PeriodicalId":43760,"journal":{"name":"New Bioethics-A Multidisciplinary Journal of Biotechnology and the Body","volume":"29 1","pages":"1-9"},"PeriodicalIF":1.2,"publicationDate":"2023-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9074913","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"How Then Should We Die? Two Opposing Responses to the Challenges of Suffering and Death","authors":"Xavier Symons","doi":"10.1080/20502877.2022.2162470","DOIUrl":"https://doi.org/10.1080/20502877.2022.2162470","url":null,"abstract":"","PeriodicalId":43760,"journal":{"name":"New Bioethics-A Multidisciplinary Journal of Biotechnology and the Body","volume":"29 1","pages":"193 - 194"},"PeriodicalIF":1.2,"publicationDate":"2023-01-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45899464","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"An end of year ethical smorgasbord.","authors":"Trevor Stammers","doi":"10.1080/20502877.2022.2141152","DOIUrl":"https://doi.org/10.1080/20502877.2022.2141152","url":null,"abstract":"This issue provides an end of year feast with something for everyone. Browning and Veit note how, since the presence of sentience in mammals, birds and cephalopods received official scientific recognition in the 2012 Cambridge Declaration on Consciousness, animal sentience has been legally recognized in the European Union, UK, New Zealand and parts of Australia. In their paper, they ‘analyze this shift towards recognition of sentience in the regulation and practice in the treatment of laboratory animals and its effects on animal welfare and use’. Using a series of Feinberg-type cabin cases, Simkulet in his paper, intriguingly entitled Abortion, Rights and Cabin Cases, critiques Perry Hendricks’ ‘attempts to bypass discussion of rights, assuming that if he can show that some people have a right to use other’s bodies, then we ought to restrict abortion’, and argues that Hendricks’ restrictivist argument fails. Abortion is the most common (though not the only) clinical procedure where the law often specifies mechanisms for conscientious objection by healthcare professionals. Wibye makes the case for ‘a regulatory option for conscientious objection in health care that has yet to be systematically examined by ethicists and policymakers: granting a liberty to request exemption from prescribed work tasks without a companion guarantee that the request is accommodated’ Retrospective reflections on UK legislative matters are the subject of the next two papers. Lee and Tham explore the opt-out policy on organ donation in Scotland, 18 months after its introduction and recommend ‘more research into organ donors’ psychological motivations to help governments and the healthcare profession obtain more organs for transplantation’. Wojtulewicz’s extensive analysis of the failed Assisted Dying Bill [HL] 2021, concludes that the essential source of disagreement lies outside of the arguments raised, and therefore any change in the law is not likely ‘to arise from political consensus’. This paper has already been cited by a UK Parliamentary publication even before its appearance in this issue. A new first for this journal. The final paper by Hendricks and Seybold criticizes the still extant practice of unauthorized pelvic examinations (UPEs) on unconscious female patients by medical students as part of their training. They argue that ‘Since there are no morally significant differences between UPEs and other instances of digital penetration, UPEs are sexual assault’. It is surely time this practice was ended worldwide in the training of medical students. the new bioethics, Vol. 28 No. 4, 2022, 297–298","PeriodicalId":43760,"journal":{"name":"New Bioethics-A Multidisciplinary Journal of Biotechnology and the Body","volume":"28 4","pages":"297-298"},"PeriodicalIF":1.2,"publicationDate":"2022-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10627031","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Unauthorized Pelvic Exams are Sexual Assault.","authors":"Perry Hendricks,&nbsp;Samantha Seybold","doi":"10.1080/20502877.2022.2102132","DOIUrl":"https://doi.org/10.1080/20502877.2022.2102132","url":null,"abstract":"<p><p>The pelvic exam is used to assess the health of female reproductive organs and so involves digital penetration by a physician. However, it is common practice for medical students to acquire experience in administering pelvic exams by performing them on unconscious patients without prior authorization. In this article, we argue that such unauthorized pelvic exams (UPEs) are sexual assault. Our argument is simple: in any other circumstance, unauthorized digital penetration amounts to sexual assault. Since there are no morally significant differences between UPEs and other instances of digital penetration, UPEs are sexual assault. So, insofar as one is against sexual assault, one should be against UPEs.</p>","PeriodicalId":43760,"journal":{"name":"New Bioethics-A Multidisciplinary Journal of Biotechnology and the Body","volume":"28 4","pages":"368-376"},"PeriodicalIF":1.2,"publicationDate":"2022-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9180544","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Analysing the Assisted Dying Bill [HL] debate 2021.","authors":"Christopher M Wojtulewicz","doi":"10.1080/20502877.2022.2090652","DOIUrl":"https://doi.org/10.1080/20502877.2022.2090652","url":null,"abstract":"<p><p>This paper considers the number of speeches which treat central topics in the House of Lords second reading of the 'Assisted Dying Bill' (October 22, 2021). It summarizes some of the principal arguments for and against the Bill according to the main categories of discussion. These were compassion; palliative care; autonomy, choice and control; legal and social effects. In summarizing the arguments thematically, it is possible to see the current state of the debate and how concerns are shared on either side, even if approaches to and proposed solutions for those problems are different. The paper concludes that the essential source of disagreement lies outside of the arguments raised, and therefore that any change in the law is not likely to arise from political consensus.</p>","PeriodicalId":43760,"journal":{"name":"New Bioethics-A Multidisciplinary Journal of Biotechnology and the Body","volume":"28 4","pages":"350-367"},"PeriodicalIF":1.2,"publicationDate":"2022-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10623109","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Abortion, Rights, and Cabin Cases.","authors":"William Simkulet","doi":"10.1080/20502877.2022.2116768","DOIUrl":"https://doi.org/10.1080/20502877.2022.2116768","url":null,"abstract":"<p><p>Many people believe the morality of abortion stands or falls on the moral status of the fetus, with abortion opponents arguing fetuses are persons with a right to life. Judith Jarvis Thomson bypasses this debate, arguing that even if we assume fetuses have a right to life, this is not a right to use other people's bodies. Recently Perry Hendricks attempts to bypass discussion of rights, assuming that if he can show that some people have a right to use other's bodies, then we ought to restrict abortion (and perhaps compel organ donation, charity, etc.). Hendricks attempts to illustrate this by way of a Feinberg-style cabin case. I argue Hendricks' restrictivist argument fails.</p>","PeriodicalId":43760,"journal":{"name":"New Bioethics-A Multidisciplinary Journal of Biotechnology and the Body","volume":"28 4","pages":"315-326"},"PeriodicalIF":1.2,"publicationDate":"2022-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10679573","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Ethics for bioengineering scientists: treating data as clients","authors":"M. Pruski","doi":"10.1080/20502877.2022.2146635","DOIUrl":"https://doi.org/10.1080/20502877.2022.2146635","url":null,"abstract":"","PeriodicalId":43760,"journal":{"name":"New Bioethics-A Multidisciplinary Journal of Biotechnology and the Body","volume":"29 1","pages":"191 - 193"},"PeriodicalIF":1.2,"publicationDate":"2022-11-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42608153","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}