Pub Date : 2023-06-01Epub Date: 2022-11-14DOI: 10.1080/20502877.2022.2143742
Daniel A Wilkenfeld, Teresa Hagan Thomas
Increasing emphasis on patient self-management, including having patients advocate for their needs and priorities, is generally a good thing, but it is not always wanted or attainable by patients. The aim of this critical ethical review is to deepen the current discourse in patient self-advocacy by exposing various situations in which patients struggle to self-advocate. Using examples from oncology patient populations, we disambiguate different notions of self-advocacy and then present limits to the more demanding varieties (i.e., health-related, trust-based, and psychological); we argue that these limits create ethical dilemmas with respect to whether it is always desirable to encourage patients to self-advocate. We conclude that self-advocacy can be both under and overrated with respect to how much it benefits the patient with cancer, with many instances being indeterminate. Ultimately, providers must understand the patient's perspective relative to the challenges they are experiencing and work with them to meet their needs.
{"title":"What are We Asking Patients to Do? A Critical Ethical Review of the Limits of Patient Self-Advocacy in the Oncology Setting.","authors":"Daniel A Wilkenfeld, Teresa Hagan Thomas","doi":"10.1080/20502877.2022.2143742","DOIUrl":"10.1080/20502877.2022.2143742","url":null,"abstract":"<p><p>Increasing emphasis on patient self-management, including having patients advocate for their needs and priorities, is generally a good thing, but it is not always wanted or attainable by patients. The aim of this critical ethical review is to deepen the current discourse in patient self-advocacy by exposing various situations in which patients struggle to self-advocate. Using examples from oncology patient populations, we disambiguate different notions of self-advocacy and then present limits to the more demanding varieties (i.e., health-related, trust-based, and psychological); we argue that these limits create ethical dilemmas with respect to whether it is always desirable to encourage patients to self-advocate. We conclude that self-advocacy can be both under and overrated with respect to how much it benefits the patient with cancer, with many instances being indeterminate. Ultimately, providers must understand the patient's perspective relative to the challenges they are experiencing and work with them to meet their needs.</p>","PeriodicalId":43760,"journal":{"name":"New Bioethics-A Multidisciplinary Journal of Biotechnology and the Body","volume":"29 2","pages":"181-190"},"PeriodicalIF":1.2,"publicationDate":"2023-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10183048/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9572277","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-06-01DOI: 10.1080/20502877.2022.2142094
Gamal Serour, Mohammed Ghaly, Shaikh Mohd Saifuddeen, Ayaz Anwar, Noor Munirah Isa, Alexis Heng Boon Chin
An exciting development in the field of assisted reproductive technologies is In Vitro Gametogenesis (IVG) that enables production of functional gametes from stem cells in the laboratory. Currently, development of this technology is still at an early stage and has demonstrated to work only in rodents. Upon critically examining the ethical dimensions of various possible IVG applications in human fertility treatment from a Sunni Islamic perspective, together with benefit-harm (maslahah-mafsadah) assessment; it is concluded that utilization of IVG, once its efficacy and safety are guaranteed, could be permissible by strictly adhering to Islamic ethical principles related to marriage, biological/genetic relatedness, sexual intercourse, and moral status of the embryo/fetus versus that of the gamete. As a result, IVG will be acceptable for treating primary infertility, age-related infertility, and preventing genetic diseases. However, it will be unacceptable for application in posthumous reproduction, donor gametes, genetic enhancement, and procreation in same-sex couples.
{"title":"Sunni Islamic perspectives on lab-grown sperm and eggs derived from stem cells - in vitro gametogenesis (IVG).","authors":"Gamal Serour, Mohammed Ghaly, Shaikh Mohd Saifuddeen, Ayaz Anwar, Noor Munirah Isa, Alexis Heng Boon Chin","doi":"10.1080/20502877.2022.2142094","DOIUrl":"https://doi.org/10.1080/20502877.2022.2142094","url":null,"abstract":"<p><p>An exciting development in the field of assisted reproductive technologies is <i>In Vitro</i> Gametogenesis (IVG) that enables production of functional gametes from stem cells in the laboratory. Currently, development of this technology is still at an early stage and has demonstrated to work only in rodents. Upon critically examining the ethical dimensions of various possible IVG applications in human fertility treatment from a <i>Sunni</i> Islamic perspective, together with benefit-harm (<i>maslahah-mafsadah</i>) assessment; it is concluded that utilization of IVG, once its efficacy and safety are guaranteed, could be permissible by strictly adhering to Islamic ethical principles related to marriage, biological/genetic relatedness, sexual intercourse, and moral status of the embryo/fetus versus that of the gamete. As a result, IVG will be acceptable for treating primary infertility, age-related infertility, and preventing genetic diseases. However, it will be unacceptable for application in posthumous reproduction, donor gametes, genetic enhancement, and procreation in same-sex couples.</p>","PeriodicalId":43760,"journal":{"name":"New Bioethics-A Multidisciplinary Journal of Biotechnology and the Body","volume":"29 2","pages":"108-120"},"PeriodicalIF":1.2,"publicationDate":"2023-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9561231","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}
Pub Date : 2023-06-01DOI: 10.1080/20502877.2022.2136026
Gregory K Pike
Reproductive coercion encompasses a collection of pregnancy promoting and pregnancy avoiding behaviours. Coercion may vary in severity and be perpetrated by intimate partners or others. Research is complicated by the inclusion of behaviours that do not necessarily involve an intention to influence reproduction, such as contraceptive sabotage. These behaviours are the most common, but are not always included in survey instruments. This may explain why the prevalence of reproductive coercion varies widely. Prevalence also varies when coerced abortion is included in survey instruments. When it is, it seems roughly comparable in prevalence to coercion intended to impregnate. The extent and nature of coerced abortion can also be derived from studies that explore the reasons why women access abortion, the relationship between abortion and intimate partner violence, and online blogs and forums. This narrative review of reproductive coercion examines the evidence and attempts to comprehend why coerced abortion has been neglected.
{"title":"Coerced Abortion - The Neglected Face of Reproductive Coercion.","authors":"Gregory K Pike","doi":"10.1080/20502877.2022.2136026","DOIUrl":"https://doi.org/10.1080/20502877.2022.2136026","url":null,"abstract":"<p><p>Reproductive coercion encompasses a collection of pregnancy promoting and pregnancy avoiding behaviours. Coercion may vary in severity and be perpetrated by intimate partners or others. Research is complicated by the inclusion of behaviours that do not necessarily involve an intention to influence reproduction, such as contraceptive sabotage. These behaviours are the most common, but are not always included in survey instruments. This may explain why the prevalence of reproductive coercion varies widely. Prevalence also varies when coerced abortion is included in survey instruments. When it is, it seems roughly comparable in prevalence to coercion intended to impregnate. The extent and nature of coerced abortion can also be derived from studies that explore the reasons why women access abortion, the relationship between abortion and intimate partner violence, and online blogs and forums. This narrative review of reproductive coercion examines the evidence and attempts to comprehend why coerced abortion has been neglected.</p>","PeriodicalId":43760,"journal":{"name":"New Bioethics-A Multidisciplinary Journal of Biotechnology and the Body","volume":"29 2","pages":"85-107"},"PeriodicalIF":1.2,"publicationDate":"2023-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9622887","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}
Pub Date : 2023-06-01DOI: 10.1080/20502877.2023.2214772
Matt James
As we attempt to move on from the Covid-19 pandemic, the mounting pressures on health and social care are striking for all to see. Many of the articles in this issue speak to this theme: access to treatment, standards of care and practice and what it means to deliver patient-centred care. Pike’s article helps to bring some valuable insight to the collective understanding concerning Reproductive Coercion (RC). Much has been written in the literature about reproductive autonomy and how this can be influenced and impeded by others, but use of the term RC has opened up the discussion still further concerning decision making in the realm of reproductive health. As Pike notes, whilst research in the field is helpful in illuminating the extent of the issue, it is complicated by the inclusion of behaviours that do not necessarily involve an intention to influence reproduction, such as contraceptive sabotage. Pike helpfully unpacks and explores the fact that coercion and reproductive autonomy are each ‘conceptually complex ideas as much as they are pragmatically complex ones’. Discussion cannot simply be reduced to stating that one is good or bad. More precision is needed as to the severity and detail of the coercion to better understand the extent of the problem. To this end, Pike argues that to do this survey questions should aim not only to equally address all elements of RC, but also to distinguish between actions that intentionally coerce someone into pregnancy and those that override autonomy but without intent to induce pregnancy. In cases where contraceptive interference takes place, with no intention to induce pregnancy, it may even be better understood not as RC, but instead as behaviours impinging on sexual consent and openness between partners and deserving separate consideration. The degree of recognition and understanding of RC as pregnancy pressure and contraceptive sabotage has improved, yet the same cannot be said of coerced abortion. It is hoped that a response to this takes place far quicker than the time it has taken to recognize and respond to coerced adoption. As Pike comments, ‘The first step is to recognize that it does happen, that it is relatively common, and that it not only leads to more adverse outcomes than when coercion is absent, but also denies women their fundamental right to informed consent.’ Keeping with this theme of reproductive health, if the arrival of the first ‘test tube’ baby in 1978 is recognized as transforming human fertility, then advances in In Vitro Gametogenesis (IVG) look set to usher in a new era of assisted reproduction. the new bioethics, Vol. 29 No. 2, 2023, 81–84
{"title":"Life Is All About Choices.","authors":"Matt James","doi":"10.1080/20502877.2023.2214772","DOIUrl":"https://doi.org/10.1080/20502877.2023.2214772","url":null,"abstract":"As we attempt to move on from the Covid-19 pandemic, the mounting pressures on health and social care are striking for all to see. Many of the articles in this issue speak to this theme: access to treatment, standards of care and practice and what it means to deliver patient-centred care. Pike’s article helps to bring some valuable insight to the collective understanding concerning Reproductive Coercion (RC). Much has been written in the literature about reproductive autonomy and how this can be influenced and impeded by others, but use of the term RC has opened up the discussion still further concerning decision making in the realm of reproductive health. As Pike notes, whilst research in the field is helpful in illuminating the extent of the issue, it is complicated by the inclusion of behaviours that do not necessarily involve an intention to influence reproduction, such as contraceptive sabotage. Pike helpfully unpacks and explores the fact that coercion and reproductive autonomy are each ‘conceptually complex ideas as much as they are pragmatically complex ones’. Discussion cannot simply be reduced to stating that one is good or bad. More precision is needed as to the severity and detail of the coercion to better understand the extent of the problem. To this end, Pike argues that to do this survey questions should aim not only to equally address all elements of RC, but also to distinguish between actions that intentionally coerce someone into pregnancy and those that override autonomy but without intent to induce pregnancy. In cases where contraceptive interference takes place, with no intention to induce pregnancy, it may even be better understood not as RC, but instead as behaviours impinging on sexual consent and openness between partners and deserving separate consideration. The degree of recognition and understanding of RC as pregnancy pressure and contraceptive sabotage has improved, yet the same cannot be said of coerced abortion. It is hoped that a response to this takes place far quicker than the time it has taken to recognize and respond to coerced adoption. As Pike comments, ‘The first step is to recognize that it does happen, that it is relatively common, and that it not only leads to more adverse outcomes than when coercion is absent, but also denies women their fundamental right to informed consent.’ Keeping with this theme of reproductive health, if the arrival of the first ‘test tube’ baby in 1978 is recognized as transforming human fertility, then advances in In Vitro Gametogenesis (IVG) look set to usher in a new era of assisted reproduction. the new bioethics, Vol. 29 No. 2, 2023, 81–84","PeriodicalId":43760,"journal":{"name":"New Bioethics-A Multidisciplinary Journal of Biotechnology and the Body","volume":"29 2","pages":"81-84"},"PeriodicalIF":1.2,"publicationDate":"2023-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9878034","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}
Pub Date : 2023-06-01DOI: 10.1080/20502877.2022.2150129
Nathan Gamble, Benjamin Holler, Stephen Murata
Over the past century, six studies - the most recent data from 2000 - and one review have comprehensively examined the content of medical oaths and oath-taking practices, all focusing on North America, providing an insight into the ethical beliefs of each era. Our study sought to establish a new point of reference. In 2014/2015, oaths from 150 of all 153 US and Canadian medical schools were collected and analyzed. All but one school administered medical oaths and most schools administered more than one. Since 2000, student-written oaths became more popular, and new themes, such as self-care and professionalism, were identified in the oaths for the first time. However, as was identified in 2000, the oaths' contents are disparate and even conflicting at times, raising questions as to whether medicine is being taught or practiced with a coherent ethical worldview.
{"title":"'Swear by Thy Gracious Self': North American Medical Oath-Taking in 2014/2015.","authors":"Nathan Gamble, Benjamin Holler, Stephen Murata","doi":"10.1080/20502877.2022.2150129","DOIUrl":"https://doi.org/10.1080/20502877.2022.2150129","url":null,"abstract":"<p><p>Over the past century, six studies - the most recent data from 2000 - and one review have comprehensively examined the content of medical oaths and oath-taking practices, all focusing on North America, providing an insight into the ethical beliefs of each era. Our study sought to establish a new point of reference. In 2014/2015, oaths from 150 of all 153 US and Canadian medical schools were collected and analyzed. All but one school administered medical oaths and most schools administered more than one. Since 2000, student-written oaths became more popular, and new themes, such as <i>self-care</i> and <i>professionalism</i>, were identified in the oaths for the first time. However, as was identified in 2000, the oaths' contents are disparate and even conflicting at times, raising questions as to whether medicine is being taught or practiced with a coherent ethical worldview.</p>","PeriodicalId":43760,"journal":{"name":"New Bioethics-A Multidisciplinary Journal of Biotechnology and the Body","volume":"29 2","pages":"121-138"},"PeriodicalIF":1.2,"publicationDate":"2023-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9925314","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}
Pub Date : 2023-03-01DOI: 10.1080/20502877.2022.2109697
Richard Milne, Christine Patch
The Covid-19 pandemic has demonstrated the potential of genomic technologies for the detection and surveillance of infectious diseases. Pathogen genomics is likely to play a major role in the future of research and clinical implementation of genomic technologies. However, unlike human genetics, the specific ethical and social challenges associated with the implementation of infectious disease genomics has received comparatively little attention. In this paper, we contribute to this literature, focusing on the potential consequences for individuals and communities of the use of these technologies. We concentrate on areas of challenges related to privacy, stigma, discrimination and the return of results in the cases of the surveillance of known pathogens, metagenomics and host genomics.
{"title":"Ethical Challenges Associated with Pathogen and Host Genetics in Infectious Disease.","authors":"Richard Milne, Christine Patch","doi":"10.1080/20502877.2022.2109697","DOIUrl":"https://doi.org/10.1080/20502877.2022.2109697","url":null,"abstract":"<p><p>The Covid-19 pandemic has demonstrated the potential of genomic technologies for the detection and surveillance of infectious diseases. Pathogen genomics is likely to play a major role in the future of research and clinical implementation of genomic technologies. However, unlike human genetics, the specific ethical and social challenges associated with the implementation of infectious disease genomics has received comparatively little attention. In this paper, we contribute to this literature, focusing on the potential consequences for individuals and communities of the use of these technologies. We concentrate on areas of challenges related to privacy, stigma, discrimination and the return of results in the cases of the surveillance of known pathogens, metagenomics and host genomics.</p>","PeriodicalId":43760,"journal":{"name":"New Bioethics-A Multidisciplinary Journal of Biotechnology and the Body","volume":"29 1","pages":"24-36"},"PeriodicalIF":1.2,"publicationDate":"2023-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10840412","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}
Pub Date : 2023-03-01DOI: 10.1080/20502877.2022.2139621
Edward Hockings
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.
{"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}
Pub Date : 2023-03-01Epub Date: 2022-04-28DOI: 10.1080/20502877.2022.2060590
Rachel Horton, Anneke Lucassen
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.
{"title":"Ethical Considerations in Research with Genomic Data.","authors":"Rachel Horton, Anneke Lucassen","doi":"10.1080/20502877.2022.2060590","DOIUrl":"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":1.5,"publicationDate":"2023-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7618432/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9413311","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-03-01DOI: 10.1080/20502877.2022.2124582
Fiona Ulph, Rebecca Bennett
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.
{"title":"Psychological and Ethical Challenges of Introducing Whole Genome Sequencing into Routine Newborn Screening: Lessons Learned from Existing Newborn Screening.","authors":"Fiona Ulph, 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}
Pub Date : 2023-03-01DOI: 10.1080/20502877.2023.2180839
Chris Willmott, John Bryant
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.
{"title":"Genomics is here: what can we do with it, and what ethical issues has it brought along for the ride?","authors":"Chris Willmott, 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}