PubMed Health⌕ Search

Biomedical subjects

Jackie Leach Scully

Publications and source records attributed to Jackie Leach Scully.

5 recordsLinked to original sources
PubMed2025

"All doctors should be trained in that": The coproduction and mixed-methods evaluation of an educational toolkit to enable safe, high-quality genetic health care for people with intellectual disability.

PURPOSE: People with intellectual disability inequitably access high-quality genetic health care. However, they are keen to understand genetic health care and recommend that clinicians need education on delivering more inclusive care and that multimodal genetic health literacy resources should be coproduced. METHODS: Our inclusive research team applied best-practice coproduction principles to deliver a suite of resources, the GeneEQUAL Toolkit. Mixed-methods evaluation, including surveys and focus group/interviews, assessed (1) clinicians' perceived capabilities, motivation, and opportunities for providing inclusive health care for people with intellectual disability before and after exploring the Toolkit; (2) the perceptions and opinions of people with intellectual disability about the Toolkit; (3) the reach of the Toolkit components; and (4) the reflections of people with intellectual disability and clinicians on the coproduction process. RESULTS: The Toolkit met the expectations and preferences of people with intellectual disability and clinicians, and had a global reach. Coproduction was feasible and judged as critical for the high value of the Toolkit, in motivating clinicians to change their clinical practice and empowering people with intellectual disability. CONCLUSION: Coproduction can be successfully applied to improve the engagement of people with intellectual disability, potentially reducing health inequity and improving the safety and quality of genetic health care.

Humans↗
PubMed2006

Chance, choice and control: lay debate on prenatal social sex selection.

Assisted reproductive technologies are typically positioned as increasing the range of choices open to the healthcare consumer, thereby enhancing 'reproductive freedom'. In this paper, we question the equivalence of reproductive choice and personal freedom in ethical theory, using results from a project investigating how lay people make ethical evaluations about the new genetic and reproductive technologies. We took the topic of social sex selection by preimplantation genetic diagnosis (PGD), and used group discussions and interviews in the north-east of England to trace how lay people develop and express their ethical evaluations, and to identify the implicit or explicit normative framework that gave rise to their opinions on prenatal sex selection. There was a striking level of ambivalence towards choice in general and reproductive choice in particular. Participants offered few positive statements and numerous reasons why reproductive choice might be problematic. Our participants' argumentation shares with mainstream bioethical analysis the weighing of the possible harms of prenatal sex selection for social reasons against the harm of restricting reproductive freedom. However, unlike most secular-liberal bioethicists, many of our participants concluded that prenatal sex selection is undesirable because it is an expression of parental preference instead of a response to the future child's need. Our interpretation of their reasoning is that they work from an ideal of "good parents", one of the features of which is the relinquishing of control over their children, except to protect them from harm. This voluntary self-limitation does not indicate reduced autonomy, because parental autonomy can only operate within the limits set by this relational framework. We suggest that a model of relational autonomy captures our lay participants' framing of the problem better than a more traditional understanding of autonomy. Our study also shows that in appropriately structured discussion of bioethical issues, lay people can articulate reasons for their opinions that are grounded in sophisticated and morally relevant concepts.

Adolescent↗
PubMed2006

Gift not commodity? Lay people deliberating social sex selection.

In this paper we explore lay people's discussions of the controversial topic of social sex selection (SSS). In the UK and many other countries, SSS is prohibited by law. In 2003 the UK Human Fertilisation and Embryology Authority, after an extensive public consultation, decided against changing the existing legislation. However, this initiative and similar consultation exercises have been criticised on the grounds that public opinion is poorly informed and reasoned. In our study, one of the most consistently expressed ideas was that children should be regarded as 'a gift' rather than 'a commodity'. In contrast, the 'gift not a commodity' argument is rarely cited positively in Anglo-American, secular-liberal bioethics. These metaphorical statements are condensed articulations of complex but coherent moral intuitions. Where much of the bioethics literature stresses parental autonomy, our lay discussants balanced this principle with ideas about the need to respect the personhood of the potential child, and the characteristics of a good parent. We conclude our analysis by considering the implications for expanding bioethics' knowledge base and improving the input of lay people in bioethical decision making.

Adult↗
PubMed2004

Non-professionals' evaluations of gene therapy ethics.

Although the moral responsibilities of clinicians and researchers in the new genetics are exhaustively reflected upon, much less attention has been paid to the factors affecting the moral reasoning of non-professionals when they reflect on genetic issues. In this paper, we compare the moral evaluations of somatic gene therapy (SGT) made by some of its potential consumers (patients) and its providers (medical professionals). The results highlight significant differences between professional opinion and non-professional evaluations. Medical professionals shared a moral evaluation of SGT that (a) based its acceptability on a strong therapeutic imperative, (b) grounded this in an unproblematic separation of identity and disability/illness, and (c) generally did not see SGT as ethically different from other medical interventions. Prospective patients (a) often questioned the effectiveness of "therapeutic" interventions, (b) could derive a strong sense of identity from disability/illness, and (c) sometimes saw genetic interventions as changing a person's identity, either directly (through the genes) or indirectly (through altered life experience). We discuss the implications of these differences for the professional and public debate on the ethics of gene therapy. Our results highlight the need to take into account non-professionals' views of SGT.

Bioethics↗
PubMed2004

What is a disease?

Explore the source record for details and available documents.

Chronic Disease↗