DOI: 10.15131/shef.data.7971317.v1
title: Delphi consensus exercise 2018 - responding to genetic risk associated with close blood relative marriage in England

description: The data come from a structured Delphi consensus building exercise involving policy-makers and practitioners in England. <b> </b> <b>Objectives</b> (1) To explore professional and lay stakeholder views on the design and delivery of services in the area of consanguinity and genetic risk. (2) To identify principles upon which there is sufficient consensus to warrant inclusion in a national guidance document. (3) To highlight issues where inter-professional differences of opinion necessitate further debate and dialogue. (4) To identify areas where further research and/or development work is needed to develop principles into practical service approaches.The present exercise was conducted between March and July 2018 using three rounds of online consultation, followed by a face-to-face consensus conference. In round 1, participants were asked to provide statements that captured the key principles or elements of service design and delivery that they considered to be important in relation to responding to the genetic risk associated with customary consanguineous (close blood relative) marriage. An online form provided participants with 13 prompting headings plus an open-ended section and submissions remained open for two weeks. Responses were collated and reviewed independently by two researchers to identify duplicate and ambiguous statements, and to organise the statements into themes. Working together, the two researchers next developed an agreed coherent set of statements based around thematic areas. All unique statements were taken forward to the second round. In round 2 participants were asked to rank each of the statements on a seven point Likert scale ranging from “very strongly disagree” to “very strongly agree”. Participants were given the opportunity to select “I don’t know” for each statement and to skip entire sections if they felt insufficiently well informed to rank the statements. Participants could also provide open-ended comments on any of the statements. Round 2 remained open for two weeks. In Round 3, all participants from Round 2 were sent individualised feedback with summary tables listing for each statement (i) their own response, (ii) the weighted average, (iii) the percentage of all participants who agreed and (iv) the percentage who responded “don’t know”. Based on this information, they were invited to re-rank each of the statements. Participants were reminded that they could stick to their original ranking if they so wished. Open-ended feedback from Round 2 was reviewed and minor amendments made to ensure statement clarity. Round 3 remained open for two weeks. A half-day consensus conference (CC) was next convened to discuss the findings. Data from the CC are not archived here.<br>Demographic information was collected on respondents but is not included with the datasets in order to preserve anonymity.<br>3 datasets in excel are archived here relating to Rounds 1, 2 and 3 separately.<br>pdfs of the questionnaires used to generate the data are also archived here.