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Cross currents in genetics and ethics around the millennium 1999-2001: final report to the Wellcome Trust

Alderson, P; Farsides, B; Williams, C; (2001) Cross currents in genetics and ethics around the millennium 1999-2001: final report to the Wellcome Trust. Social Science Research Unit, Institute of Education, University of London: London, UK. Green open access

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Abstract

KEY QUESTIONS: How is genetic knowledge affecting policy and practice in perinatal health care services? What challenges and opportunities does the knowledge present, and how do practitioners address these in their daily work, both individually and together? What aims and values guide them, and how can insights from ethics and social science help? How can these insights be shared in more useful ways with busy practitioners? Can multidisciplinary group discussions help staff to discuss and resolve dilemmas? PARTICIPANTS AND DATA COLLECTION: Seventy people working in or linked to two English hospitals, (one teaching hospital and one district general hospital) and in attached community services, were interviewed individually by the two research sociologists (PA and CW). The semi-structured 'guided conversations' encouraged respondents to give their own accounts and meanings. The interview themes included interviewees' views about genetic developments and moral beliefs and values, and how these affected their daily work. Interviews were supplemented with ethnographic observations. Fifty-six interviewees then took part in eleven small discussion groups led by a health care ethicist (BF); twelve people attended twice, at their request. Their work related directly or indirectly to perinatal care, and participants included: midwives; health visitors; neonatal nurses; genetic counsellors; sonographers; obstetricians; fetal medicine specialists; haematologists; paediatricians; psychologists; chaplains; legal, audit and primary care managers. For approximately two hours each, the groups discussed topics raised during the earlier interviews, and were of mixed disciplines and seniority. With permission, interviews and seminars were taped and transcribed. Participants gave short follow up individual evaluations of the seminars. DATA ANALYSIS: The transcripts were analysed and coded by content for emergent themes. Codes were compared for similarities and differences across the groups, eventually leading to broader themes which made up the overall theoretical framework. The research team met frequently to discuss the data and analysis and to incorporate sociological and philosophical perspectives, in order to add to the richness and validity of the analysis. RESULTS OF THE INTERVENTION: Participants found the in-hospital ethics seminars useful in increasing inter-professional understanding, engaging people from varied backgrounds, covering a wide range of pressing issues coherently, and addressing important though seldom discussed ethical questions. Crucially, the agenda were based on prior in-depth interviews with health staff on their key, local concerns about the social and ethical consequences of advances in genetics and their impact on professional policies and practice. The seminars worked well in contrasting hospitals and specialties. A planned series of seminars would have more effect on policy and practice than single events and could, potentially, contribute usefully to clinical governance. REPORTS: The main outcomes of the project are papers for professional and academic journals based on the transcripts. The papers completed so far, report: participants’ evaluations of the in-hospital ethics seminars; the many complications which practitioners experience when trying to provide equitable prenatal services linked to the characteristics of the women they work with and to broader questions of ethnicity, gender and religious belief; the complications of trying to `draw the line’ over which fetal conditions should be tested and referred for termination of pregnancy; the dilemmas raised by nuchal translucency utlrasound scans; and whether non-directiveness and informed choice are possible in the context of antenatal screening and testing.

Type: Report
Title: Cross currents in genetics and ethics around the millennium 1999-2001: final report to the Wellcome Trust
Open access status: An open access version is available from UCL Discovery
Publisher version: http://www.ucl.ac.uk/ioe
Language: English
Additional information: This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions.
UCL classification: UCL
UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Education
UCL > Provost and Vice Provost Offices > School of Education > UCL Institute of Education
UCL > Provost and Vice Provost Offices > School of Education > UCL Institute of Education > IOE - Social Research Institute
URI: https://discovery.ucl.ac.uk/id/eprint/1536253
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