Lucy Frith | University of Liverpool (original) (raw)
Papers by Lucy Frith
Journal of Medical Ethics
R Coker. St Martins Press, 2000, US$27.95, pp 261. ISBN 0-312-22250-5 This is a fascinating book.... more R Coker. St Martins Press, 2000, US$27.95, pp 261. ISBN 0-312-22250-5 This is a fascinating book. It uses tuberculosis to look at the balance between individual lib- erty and the public good: the tensions created between personal liberty and social responsi- bility, a strong ...
BMJ Open
IntroductionBig data research has grown considerably over the last two decades. This presents new... more IntroductionBig data research has grown considerably over the last two decades. This presents new ethical challenges around consent, data storage and anonymisation. Big data research projects require public support to succeed and it has been argued that one way to achieve this is through public involvement and engagement. To better understand the role public involvement and engagement can play in big data research, we will review the current literature. This protocol describes the planned review methods.Methods and analysisOur review will be conducted in two stages. In the first stage, we will conduct a scoping review using Arksey and O’Malley methodology to comprehensively map current evidence on public involvement and engagement in big data research. Databases (CINAHL, Health Research Premium Collection, PubMed, Scopus, Web of Science) and grey literature will be searched for eligible papers. We provide a narrative description of the results based on a thematic analysis. In the se...
International Journal of Neonatal Screening
Newborn bloodspot screening for cystic fibrosis is a valid public health strategy for populations... more Newborn bloodspot screening for cystic fibrosis is a valid public health strategy for populations with a high incidence of this inherited condition. There are a wide variety of approaches to screening and in this paper, we propose that a bioethical framework is required to determine the most appropriate screening protocol for a population. This framework depends on the detailed evaluation of the ethical consequences of all screening outcomes and placing these in the context of the genetic profile of the population screened, the geography of the region and the healthcare resources available.
The American Journal of Bioethics
Journal of Medical Ethics
What does the reality of COVID-19 say about bioethics as a discipline, or the role of bioethicist... more What does the reality of COVID-19 say about bioethics as a discipline, or the role of bioethicists in society? Why are so many ‘pandemic ethics’ plans or triage heuristics being suddenly thrown together? Is it a problem that multiple conflicting proposals for how to allocate scarce resources (eg, ventilators) are being published on an almost daily basis? How can we reach a consensus about such questions and should consensus be a goal? What should the role be for bioethicists in this kind of crisis, are we equipped to pass judgment on such high-stakes, real-life normative questions?
Social Science & Medicine
Journal of Medical Ethics
Families, Relationships and Societies
This article reports on a study of individuals and couples who provided or received embryos under... more This article reports on a study of individuals and couples who provided or received embryos under the Snowflakes® embryo adoption programme in the US and had established contact with each other. This mixed-methods study comprised two phases: an online survey, followed by email interviews. It explores participants' initial experiences of establishing contact after embryo adoption and the birth of a child; how they developed and negotiated boundaries in their relationships with their respective provider or recipient families; and the fluid meaning and role of genetics in forming the basis for relationships. To our knowledge, this is the first study to explore how relationships are negotiated in these emerging family forms. This article extends knowledge and understanding of embryo adoption and contributes to the growing body of sociological research on information exchange and contact between parents who have children who share the same embryo or gamete donor. key words embryo adoption • embryo donation • Snowflakes® • embryo providers • embryo recipients • family-building • relationships • genetics • reproductive technologies Background: embryo donation and adoption Embryo donation for family building was first reported in Australia in 1983 (Trounson et al, 1983). In most jurisdictions embryo donation operates under provisions that discourage or prevent donorconceived individuals from learning about their donor or any other people to whom they may be genetically related as a result of donation. There are, however, some jurisdictions where anonymous donation is illegal and information sharing mandated and encouraged (
HEC Forum
This paper examines a legal case arising from a workplace grievance that progressed to being hear... more This paper examines a legal case arising from a workplace grievance that progressed to being heard at the UK's Supreme Court. The case of Doogan and Wood versus Greater Glasgow and Clyde Health Board concerned two senior midwives in Scotland, both practicing Roman Catholics, who exercised their perceived rights in accordance with section 4(1) of the Abortion Act not to participate in the treatment of women undergoing abortions. The key question raised by this case was: "Is Greater Glasgow and Clyde Health Board entitled to require the midwives to delegate, supervise and support staff in the treatment of patients undergoing termination of pregnancy?" The ethical issues concerning conscientious objection to abortion have been much debated although the academic literature is mainly concerned with the position of medical practitioners rather than what the World Health Organization terms "mid-level professionals" such as midwives. This paper examines the arguments put forward by the midwives to justify their refusal to carry out tasks they felt contravened their legal right to make a conscientious objection. We then consider professional codes, UK legislation and church legislation. While the former are given strong weighting the latter was been ignored in this case, although cases in other European countries have been prevented from escalating to such a high level by the intervention of prominent church figures. The paper concludes by stating that the question put to the courts remains as yet unanswered but offers some recommendations for future policy making and research.
BMC Medical Ethics
Background: Freedom of conscience is a core element of human rights respected by most European co... more Background: Freedom of conscience is a core element of human rights respected by most European countries. It allows abortion through the inclusion of a conscience clause, which permits opting out of providing such services. However, the grounds for invoking conscientious objection lack clarity. Our aim in this paper is to take a step in this direction by carrying out a systematic review of reasons by midwives and nurses for declining, on conscience grounds, to participate in abortion. Method: We conducted a systematic review of ethical arguments asking, "What reasons have been reported in the argument based literature for or against conscientious objection to abortion provision by nurses or midwives?" We particularly wanted to identify any discussion of the responsibilities of midwives and nurses in this area. Search terms were conscientious objection and abortion or termination and nurse or midwife or midwives or physicians or doctors or medics within the dates 2000-2016 on: HEIN legal, Medline, CINAHL, Psychinfo, Academic Search Complete, Web of Science including publications in English, German and Dutch. Final articles were subjected to a rigorous analysis, coding and classifying each line into reason mentions, narrow and broad reasons for or against conscientious objection. Results: Of an initial 1085 articles, 10 were included. We identified 23 broad reasons, containing 116narrow reasons and 269 reason mentions. Eighty one (81) narrow reasons argued in favour of and 35 against conscientious objection. Using predetermined categories of moral, practical, religious or legal reasons, "moral reasons" contained the largest number of narrow reasons (n = 58). The reasons and their associated mentions in this category outnumber those in the sum of the other three categories. Conclusions: We identified no absolute argument either for or against conscientious objection by midwives or nurses. An invisibility of midwives and nurses exists in the whole debate concerning conscientious objection reflecting a gap between literature and practice, as it is they whom WHO recommend as providers of this service. While the arguments in the literature emphasize the need for provision of conscientious objection, a balanced debate is necessary in this field, which includes all relevant health professionals.
Journal of Medical Ethics
Sociology of Health & Illness
International journal of qualitative studies on health and well-being, 2018
Recognising that one way to address the logistical and safety considerations of research conducte... more Recognising that one way to address the logistical and safety considerations of research conducted in humanitarian emergencies is to use internet communication technologies to facilitate interviews online, this article explores some practical and methodological considerations inherent to qualitative online interviewing. Reflections from a case study of a multi-site research project conducted in post-conflict countries are presented. Synchronous online cross-language qualitative interviews were conducted in one country. Although only a small proportion of interviews were conducted online (six out of 35), it remains important to critically consider the impact upon data produced in this way. A range of practical and methodological considerations are discussed, illustrated with examples. Results suggest that whilst online interviewing has methodological and ethical potential and versatility, there are inherent practical challenges in settings with poor internet and electricity infras...
BMC medical ethics, Jan 10, 2018
This paper reports the process and outcome of a consensus finding project, which began with a mee... more This paper reports the process and outcome of a consensus finding project, which began with a meeting at the Brocher Foundation in May 2015. The project sought to generate and reach consensus on standards of practice for Empirical Bioethics research. The project involved 16 academics from 5 different European Countries, with a range of disciplinary backgrounds. The consensus process used a modified Delphi approach. Consensus was reached on 15 standards of practice, organised into 6 domains of research practice (Aims, Questions, Integration, Conduct of Empirical Work, Conduct of Normative Work; Training & Expertise). Through articulating these standards we outline a position that encourages responses, and through those responses we will be able to identify points of agreement and contestation that will drive the conversation forward. In that vein, we would encourage researchers, funders and journals to engage with what we have proposed, and respond to us, so that our community of pra...
Journal of medical ethics, Jan 23, 2018
This document is designed to give guidance on assessing researchers in bioethics/medical ethics. ... more This document is designed to give guidance on assessing researchers in bioethics/medical ethics. It is intended to assist members of selection, confirmation and promotion committees, who are required to assess those conducting bioethics research when they are not from a similar disciplinary background. It does not attempt to give guidance on the quality of bioethics research, as this is a matter for peer assessment. Rather it aims to give an indication of the type, scope and amount of research that is the expected in this field. It does not cover the assessment of other activities such as teaching, policy work, clinical ethics consultation and so on, but these will be mentioned for additional context. Although it mentions the UK's Research Excellence Framework (REF), it is not intended to be a detailed analysis of the place of bioethics in the REF.
Sociology of health & illness, Jan 16, 2017
This article considers the disclosure, sharing and exchange of information on being donor conceiv... more This article considers the disclosure, sharing and exchange of information on being donor conceived within families, drawing on data from a study undertaken with donor-conceived adults registered with UK Donor Link (a voluntary DNA-linking register). This paper considers the narratives of how respondents found out they were donor-conceived and what events triggered disclosure of this information. This paper then goes on to examine the role secrecy played in their family life and uses the concept of 'display' to explore how secrecy affected their relationships with their immediate and extended family. Secrets are notoriously 'leaky' and we found complex patterns of knowing and uncertainty about whom in the family knew that the person was donor-conceived. We argue that what is kept secret and from whom provides insights into the multifaceted web of social relationships that can be created by donor-conception, and how knowledge can be managed and controlled in attempts ...
BioSocieties
Full bibliographic details must be given when referring to, or quoting from full items including ... more Full bibliographic details must be given when referring to, or quoting from full items including the author's name, the title of the work, publication details where relevant (place, publisher, date), pagination, and for theses or dissertations the awarding institution, the degree type awarded, and the date of the award.
Journal of Medical Ethics
R Coker. St Martins Press, 2000, US$27.95, pp 261. ISBN 0-312-22250-5 This is a fascinating book.... more R Coker. St Martins Press, 2000, US$27.95, pp 261. ISBN 0-312-22250-5 This is a fascinating book. It uses tuberculosis to look at the balance between individual lib- erty and the public good: the tensions created between personal liberty and social responsi- bility, a strong ...
BMJ Open
IntroductionBig data research has grown considerably over the last two decades. This presents new... more IntroductionBig data research has grown considerably over the last two decades. This presents new ethical challenges around consent, data storage and anonymisation. Big data research projects require public support to succeed and it has been argued that one way to achieve this is through public involvement and engagement. To better understand the role public involvement and engagement can play in big data research, we will review the current literature. This protocol describes the planned review methods.Methods and analysisOur review will be conducted in two stages. In the first stage, we will conduct a scoping review using Arksey and O’Malley methodology to comprehensively map current evidence on public involvement and engagement in big data research. Databases (CINAHL, Health Research Premium Collection, PubMed, Scopus, Web of Science) and grey literature will be searched for eligible papers. We provide a narrative description of the results based on a thematic analysis. In the se...
International Journal of Neonatal Screening
Newborn bloodspot screening for cystic fibrosis is a valid public health strategy for populations... more Newborn bloodspot screening for cystic fibrosis is a valid public health strategy for populations with a high incidence of this inherited condition. There are a wide variety of approaches to screening and in this paper, we propose that a bioethical framework is required to determine the most appropriate screening protocol for a population. This framework depends on the detailed evaluation of the ethical consequences of all screening outcomes and placing these in the context of the genetic profile of the population screened, the geography of the region and the healthcare resources available.
The American Journal of Bioethics
Journal of Medical Ethics
What does the reality of COVID-19 say about bioethics as a discipline, or the role of bioethicist... more What does the reality of COVID-19 say about bioethics as a discipline, or the role of bioethicists in society? Why are so many ‘pandemic ethics’ plans or triage heuristics being suddenly thrown together? Is it a problem that multiple conflicting proposals for how to allocate scarce resources (eg, ventilators) are being published on an almost daily basis? How can we reach a consensus about such questions and should consensus be a goal? What should the role be for bioethicists in this kind of crisis, are we equipped to pass judgment on such high-stakes, real-life normative questions?
Social Science & Medicine
Journal of Medical Ethics
Families, Relationships and Societies
This article reports on a study of individuals and couples who provided or received embryos under... more This article reports on a study of individuals and couples who provided or received embryos under the Snowflakes® embryo adoption programme in the US and had established contact with each other. This mixed-methods study comprised two phases: an online survey, followed by email interviews. It explores participants' initial experiences of establishing contact after embryo adoption and the birth of a child; how they developed and negotiated boundaries in their relationships with their respective provider or recipient families; and the fluid meaning and role of genetics in forming the basis for relationships. To our knowledge, this is the first study to explore how relationships are negotiated in these emerging family forms. This article extends knowledge and understanding of embryo adoption and contributes to the growing body of sociological research on information exchange and contact between parents who have children who share the same embryo or gamete donor. key words embryo adoption • embryo donation • Snowflakes® • embryo providers • embryo recipients • family-building • relationships • genetics • reproductive technologies Background: embryo donation and adoption Embryo donation for family building was first reported in Australia in 1983 (Trounson et al, 1983). In most jurisdictions embryo donation operates under provisions that discourage or prevent donorconceived individuals from learning about their donor or any other people to whom they may be genetically related as a result of donation. There are, however, some jurisdictions where anonymous donation is illegal and information sharing mandated and encouraged (
HEC Forum
This paper examines a legal case arising from a workplace grievance that progressed to being hear... more This paper examines a legal case arising from a workplace grievance that progressed to being heard at the UK's Supreme Court. The case of Doogan and Wood versus Greater Glasgow and Clyde Health Board concerned two senior midwives in Scotland, both practicing Roman Catholics, who exercised their perceived rights in accordance with section 4(1) of the Abortion Act not to participate in the treatment of women undergoing abortions. The key question raised by this case was: "Is Greater Glasgow and Clyde Health Board entitled to require the midwives to delegate, supervise and support staff in the treatment of patients undergoing termination of pregnancy?" The ethical issues concerning conscientious objection to abortion have been much debated although the academic literature is mainly concerned with the position of medical practitioners rather than what the World Health Organization terms "mid-level professionals" such as midwives. This paper examines the arguments put forward by the midwives to justify their refusal to carry out tasks they felt contravened their legal right to make a conscientious objection. We then consider professional codes, UK legislation and church legislation. While the former are given strong weighting the latter was been ignored in this case, although cases in other European countries have been prevented from escalating to such a high level by the intervention of prominent church figures. The paper concludes by stating that the question put to the courts remains as yet unanswered but offers some recommendations for future policy making and research.
BMC Medical Ethics
Background: Freedom of conscience is a core element of human rights respected by most European co... more Background: Freedom of conscience is a core element of human rights respected by most European countries. It allows abortion through the inclusion of a conscience clause, which permits opting out of providing such services. However, the grounds for invoking conscientious objection lack clarity. Our aim in this paper is to take a step in this direction by carrying out a systematic review of reasons by midwives and nurses for declining, on conscience grounds, to participate in abortion. Method: We conducted a systematic review of ethical arguments asking, "What reasons have been reported in the argument based literature for or against conscientious objection to abortion provision by nurses or midwives?" We particularly wanted to identify any discussion of the responsibilities of midwives and nurses in this area. Search terms were conscientious objection and abortion or termination and nurse or midwife or midwives or physicians or doctors or medics within the dates 2000-2016 on: HEIN legal, Medline, CINAHL, Psychinfo, Academic Search Complete, Web of Science including publications in English, German and Dutch. Final articles were subjected to a rigorous analysis, coding and classifying each line into reason mentions, narrow and broad reasons for or against conscientious objection. Results: Of an initial 1085 articles, 10 were included. We identified 23 broad reasons, containing 116narrow reasons and 269 reason mentions. Eighty one (81) narrow reasons argued in favour of and 35 against conscientious objection. Using predetermined categories of moral, practical, religious or legal reasons, "moral reasons" contained the largest number of narrow reasons (n = 58). The reasons and their associated mentions in this category outnumber those in the sum of the other three categories. Conclusions: We identified no absolute argument either for or against conscientious objection by midwives or nurses. An invisibility of midwives and nurses exists in the whole debate concerning conscientious objection reflecting a gap between literature and practice, as it is they whom WHO recommend as providers of this service. While the arguments in the literature emphasize the need for provision of conscientious objection, a balanced debate is necessary in this field, which includes all relevant health professionals.
Journal of Medical Ethics
Sociology of Health & Illness
International journal of qualitative studies on health and well-being, 2018
Recognising that one way to address the logistical and safety considerations of research conducte... more Recognising that one way to address the logistical and safety considerations of research conducted in humanitarian emergencies is to use internet communication technologies to facilitate interviews online, this article explores some practical and methodological considerations inherent to qualitative online interviewing. Reflections from a case study of a multi-site research project conducted in post-conflict countries are presented. Synchronous online cross-language qualitative interviews were conducted in one country. Although only a small proportion of interviews were conducted online (six out of 35), it remains important to critically consider the impact upon data produced in this way. A range of practical and methodological considerations are discussed, illustrated with examples. Results suggest that whilst online interviewing has methodological and ethical potential and versatility, there are inherent practical challenges in settings with poor internet and electricity infras...
BMC medical ethics, Jan 10, 2018
This paper reports the process and outcome of a consensus finding project, which began with a mee... more This paper reports the process and outcome of a consensus finding project, which began with a meeting at the Brocher Foundation in May 2015. The project sought to generate and reach consensus on standards of practice for Empirical Bioethics research. The project involved 16 academics from 5 different European Countries, with a range of disciplinary backgrounds. The consensus process used a modified Delphi approach. Consensus was reached on 15 standards of practice, organised into 6 domains of research practice (Aims, Questions, Integration, Conduct of Empirical Work, Conduct of Normative Work; Training & Expertise). Through articulating these standards we outline a position that encourages responses, and through those responses we will be able to identify points of agreement and contestation that will drive the conversation forward. In that vein, we would encourage researchers, funders and journals to engage with what we have proposed, and respond to us, so that our community of pra...
Journal of medical ethics, Jan 23, 2018
This document is designed to give guidance on assessing researchers in bioethics/medical ethics. ... more This document is designed to give guidance on assessing researchers in bioethics/medical ethics. It is intended to assist members of selection, confirmation and promotion committees, who are required to assess those conducting bioethics research when they are not from a similar disciplinary background. It does not attempt to give guidance on the quality of bioethics research, as this is a matter for peer assessment. Rather it aims to give an indication of the type, scope and amount of research that is the expected in this field. It does not cover the assessment of other activities such as teaching, policy work, clinical ethics consultation and so on, but these will be mentioned for additional context. Although it mentions the UK's Research Excellence Framework (REF), it is not intended to be a detailed analysis of the place of bioethics in the REF.
Sociology of health & illness, Jan 16, 2017
This article considers the disclosure, sharing and exchange of information on being donor conceiv... more This article considers the disclosure, sharing and exchange of information on being donor conceived within families, drawing on data from a study undertaken with donor-conceived adults registered with UK Donor Link (a voluntary DNA-linking register). This paper considers the narratives of how respondents found out they were donor-conceived and what events triggered disclosure of this information. This paper then goes on to examine the role secrecy played in their family life and uses the concept of 'display' to explore how secrecy affected their relationships with their immediate and extended family. Secrets are notoriously 'leaky' and we found complex patterns of knowing and uncertainty about whom in the family knew that the person was donor-conceived. We argue that what is kept secret and from whom provides insights into the multifaceted web of social relationships that can be created by donor-conception, and how knowledge can be managed and controlled in attempts ...
BioSocieties
Full bibliographic details must be given when referring to, or quoting from full items including ... more Full bibliographic details must be given when referring to, or quoting from full items including the author's name, the title of the work, publication details where relevant (place, publisher, date), pagination, and for theses or dissertations the awarding institution, the degree type awarded, and the date of the award.
van den Akker, O., Fronek, P., Blyth, E., & Frith, L. (2015). ‘This neo-natal ménage à trois’: Br... more van den Akker, O., Fronek, P., Blyth, E., & Frith, L. (2015). ‘This neo-natal ménage à trois’: British media framing of transnational surrogacy. Journal of Reproductive and Infant Psychology, 1-14. doi:10.1080/02646838.2015.1106454
van den Akker, O., Fronek, P., Blyth, E., & Frith, L. (2016). ‘This neo-natal ménage à trois’: Br... more van den Akker, O., Fronek, P., Blyth, E., & Frith, L. (2016). ‘This neo-natal ménage à trois’: British media framing of transnational surrogacy. Journal of Reproductive and Infant Psychology, 34(1), 15-27. doi:10.1080/02646838.2015.1106454