Publications by authors named "Sandi Dheensa"

32 Publications

ADVANCE integrated group intervention to address both substance use and intimate partner abuse perpetration by men in substance use treatment: a feasibility randomised controlled trial.

BMC Public Health 2021 05 25;21(1):980. Epub 2021 May 25.

Department of Biostatistics and Health Informatics, Institute of Psychiatry, Psychology & Neuroscience, King's College London, De Crespigny Park, London, SE5 8AF, UK.

Background: Substance use is a risk factor for intimate partner abuse (IPA) perpetration. Delivering perpetrator interventions concurrently with substance use treatment shows promise.

Methods: The feasibility of conducting an efficacy and cost-effectiveness trial of the ADVANCE 16-week intervention to reduce IPA by men in substance use treatment was explored. A multicentre, parallel group individually randomised controlled feasibility trial and formative evaluation was conducted. Over three temporal cycles, 104 men who had perpetrated IPA towards a female (ex) partner in the past year were randomly allocated to receive the ADVANCE intervention + substance use treatment as usual (TAU) (n = 54) or TAU only (n = 50) and assessed 16-weeks post-randomisation. Participants' (ex) partners were offered support and 27 provided outcome data. Thirty-one staff and 12 men who attended the intervention participated in focus groups or interviews that were analysed using the framework approach. Pre-specified criteria assessed the feasibility of progression to a definitive trial: 1) ≥ 60% of eligible male participants recruited; 2) intervention acceptable to staff and male participants; 3) ≥ 70% of participants followed-up and 4) levels of substance use and 5) IPA perpetrated by men in the intervention arm did not increase from average baseline level at 16-weeks post-randomisation.

Results: 70.7% (104/147) of eligible men were recruited. The formative evaluation confirmed the intervention's acceptability. Therapeutic alliance and session satisfaction were rated highly. The overall median rate of intervention session attendance (of 14 compulsory sessions) was 28.6% (range 14.3-64.3% by the third cycle). 49.0% (51/104) of men and 63.0% (17/27) of their (ex) partners were followed-up 16-weeks post-randomisation. This increased to 100% of men and women by cycle three. At follow-up, neither substance use nor IPA perpetration had worsened for men in the intervention arm.

Conclusions: It was feasible to deliver the ADVANCE intervention in substance use treatment services, although it proved difficult to collect data from female (ex)partners. While some progression criteria were met, others were not, although improvements were demonstrated by the third cycle. Lessons learned will be implemented into the study design for a definitive trial of the ADVANCE intervention.

Trial Registration: ISRCTN79435190 prospectively registered 22nd May 2018.
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http://dx.doi.org/10.1186/s12889-021-11012-3DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8147906PMC
May 2021

Perspectives on Motivation and Change in an Intervention for Men Who Use Substances and Perpetrate Intimate Partner Abuse: Findings From a Qualitative Evaluation of the Advance Intervention.

J Interpers Violence 2021 Mar 9:886260521997436. Epub 2021 Mar 9.

King's College London, UK.

Despite consistent evidence that substance use is a contributory risk factor for perpetration of intimate partner abuse (IPA), little evidence exists for effective interventions for male IPA perpetrators who use substances. The Advance intervention aimed to meet this need. This 16-week intervention addressed both IPA and substance use, and was for men accessing substance use treatment who had perpetrated IPA toward a female (ex-)partner within the last 12 months. Two key theories underpinned the intervention: goal theory and self-regulation theory. In this article, we aim to illustrate the views of men and substance use treatment staff on men's motivations to change, the ways in which men and staff said that men had changed their behavior, and the aspects of the intervention that they reported were key in the process of change. Using framework analysis, we analyzed data from 12 men who took part in the intervention as well as 31 staff members from substance use treatment services. Our five overarching themes were personal goal setting and motivation; recognition of IPA and the substance using lifestyle; improved self-regulation; considering the impact on others; and learning together in a group. Men and staff valued having a program that integrated IPA and substance use and thought the program was unique and much needed. Moreover, our findings suggest that goal theory, self-regulation, and more broadly, motivational and strengths-based approaches with practice-based activities, may be beneficial for effecting change in the substance using perpetrator population. However, further research is needed to determine the effectiveness of the intervention. Overall, our findings highlight the value of using qualitative outcome measures of perpetrator programs to complement quantitative measures of impact.
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http://dx.doi.org/10.1177/0886260521997436DOI Listing
March 2021

Sharing reports about domestic violence and abuse with general practitioners: a qualitative interview study.

BMC Fam Pract 2020 06 23;21(1):117. Epub 2020 Jun 23.

Bristol Medical School (Population Health Sciences), University of Bristol, Canynge Hall, 39 Whatley Road, Bristol, BS8 2PS, UK.

Background: Domestic violence and abuse (DVA) is common and damaging to health. UK national guidance advocates a multi-agency response to DVA, and domestic homicide reviews consistently recommend improved information-sharing between agencies. Identification of patients experiencing DVA in general practice may come from external information shared with the practice, such as police incident reports and multi-agency risk assessment conference (MARAC) reports. The aim of this study was to explore the views of general practitioners (GPs) and the police about sharing reports about DVA with GPs.

Methods: Qualitative semi-structured interviews were conducted with GPs, police staff and a partnership manager. Participants were located across England and Wales. Thematic analysis was undertaken.

Results: Interviews were conducted with 23 GPs, six police staff and one former partnership manager. Experiences of information-sharing with GPs about DVA varied. Participants described the relevance and value of external reports to GPs to help address the health consequences of DVA and safeguard patients. They balanced competing priorities when managing this information in the electronic medical record, namely visibility to GPs versus the risk of unintended disclosure to patients. GPs also spoke of the judgements they made about exploring DVA with patients based on external reports, which varied between abusive and non-abusive adults and children. Some felt constrained by short general practice consultations. Some police and GPs reflected on a loss of control when information about DVA was shared between agencies, and the risk of unintended consequences. Both police and GPs highlighted the importance of clear information and a shared understanding about responsibility for action.

Conclusion: GPs regarded external reports about DVA as relevant to their role, but safely recording this information in the electronic medical record and using it to support patients required complex judgements. Both GPs and police staff emphasised the importance of clarity of information and responsibility for action when information was shared between agencies about patients affected by DVA.
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http://dx.doi.org/10.1186/s12875-020-01171-4DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7313185PMC
June 2020

A study protocol to assess the feasibility of conducting an evaluation trial of the ADVANCE integrated intervention to address both substance use and intimate partner abuse perpetration to men in substance use treatment.

Pilot Feasibility Stud 2020 11;6:62. Epub 2020 May 11.

9School of Health in Social Science, University of Edinburgh, 8-9 Hope Park Square, Edinburgh, 8HQ 9NW UK.

Background: Strong evidence exists that substance use is a contributory risk factor for intimate partner abuse (IPA) perpetration. Men in substance use treatment are more likely to perpetrate IPA than men from the general population. Despite this, referral pathways are lacking for this group. This trial will assess the feasibility of conducting an evaluation trial of a tailored integrated intervention to address substance use and IPA perpetration to men in substance use treatment.

Methods/design: ADVANCE is a multicentre, parallel-group individually randomised controlled feasibility trial, with a nested formative evaluation, comparing an integrated intervention to reduce IPA + substance use treatment as usual (TAU) to TAU only. One hundred and eight men who have perpetrated IPA in the past 12 months from community substance use treatment in London, the West Midlands, and the South West will be recruited. ADVANCE is a manualised intervention comprising 2-4 individual sessions (2 compulsory) with a keyworker to set goals, develop a personal safety plan and increase motivation and readiness, followed by a 12-session weekly group intervention delivered in substance use services. Men will be randomly allocated (ratio 1:1) to receive the ADVANCE intervention + TAU or TAU only. Men's female (ex) partners will be invited to provide outcome data and offered support from integrated safety services (ISS). Regular case management meetings between substance use and ISS will manage risk. Outcome measures will be obtained at the end of the intervention (approximately 4 months post-randomisation) for all male and female participants. The main objective of this feasibility trial is to estimate parameters required for planning a definitive trial including rates of consent, recruitment, and follow-up by site and group allocation. Nested formative evaluation including focus groups and in-depth interviews will explore the intervention's acceptability to participants, group facilitators, keyworkers and ISS workers. Secondary outcomes include substance use, IPA, mental health, self-management, health and social care service use, criminal justice contacts, and quality of life.

Discussion: Findings from this feasibility trial will inform the design of a multicentre randomised controlled trial evaluating the efficacy and cost-effectiveness of the ADVANCE intervention for reducing IPA and improving the well-being of female (ex)partners.

Trial Registration: ISRCTN79435190.
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http://dx.doi.org/10.1186/s40814-020-00580-7DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7212681PMC
May 2020

"From taboo to routine": a qualitative evaluation of a hospital-based advocacy intervention for domestic violence and abuse.

BMC Health Serv Res 2020 Feb 21;20(1):129. Epub 2020 Feb 21.

Domestic Violence/Abuse and Health Research Group (DVAHG), Centre for Academic Primary Care, Bristol Medical School, University of Bristol, Canynge Hall, 39 Whatley Road, Bristol, BS8 2PS, UK.

Background: Health services are often the first point of professional contact for people who have experienced domestic violence and abuse. We report on the evaluation of a multi-site, hospital-based advocacy intervention for survivors of domestic violence and abuse. Independent Domestic Violence Advisors (IDVAs), who provide survivors with support around safety, criminal justice, and health and wellbeing, were located in five hospitals in England between 2012 and 2015 in emergency departments and maternity services. We present views about IDVAs' approaches to tackling domestic violence and abuse, how the IDVA service worked in practice, and factors that hindered and facilitated engagement with survivors.

Methods: We adopted a convenience sampling approach and invited participation from all who offered to take part within the study timeframe. Sixty-four healthcare professionals, IDVAs, IDVA service managers, and commissioners at all sites were interviewed. Interviews were analysed using a thematic approach: familiarising ourselves with the data through repeated readings and noting initial ideas; generating initial codes through double coding notable features of the data across the dataset; collating codes into potential themes; and reviewing themes to ensure they captured the essence of the data.

Results: Two key themes emerged. The first was Hospital-based IDVAs fulfil several crucial roles. This theme highlighted that healthcare professionals thought the hospital-based IDVA service was valuable because it enhanced their skills, knowledge, and confidence in asking about domestic violence and abuse. It enabled them to immediately refer and provide support to patients who might have otherwise been lost along a referral pathway. It also reached survivors who might otherwise have remained hidden. The second theme was Success hinges on a range of structural factors. This theme illustrated the importance of ongoing domestic violence and abuse training for staff, the IDVA having private and dedicated space, and the service being embedded in hospital infrastructure (e.g. featuring it in hospital-wide policies and enabling IDVAs access to medical records).

Conclusion: Hospital-based IDVAs offer a unique and valued way to respond to domestic violence and abuse in a healthcare setting. Further work must now be done to explore how to implement the service sustainably.
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http://dx.doi.org/10.1186/s12913-020-4924-1DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7035753PMC
February 2020

Exploring broad consent in the context of the 100,000 Genomes Project: a mixed methods study.

Eur J Hum Genet 2020 06 9;28(6):732-741. Epub 2020 Jan 9.

Clinical Ethics and Law at Southampton (CELS), Faculty of Medicine, University of Southampton, Southampton, UK.

The 100,000 Genomes Project (100kGP)-a hybrid clinical-research initiative-was set up to analyse whole-genome sequences (WGS) from patients living with a rare disease or cancer. The project positioned participant consent as being of central importance, but consent in the context of genomic testing raises challenging issues. In this mixed method study, we surveyed 1337 100kGP participants regarding their experiences of taking part in the project and conducted in-depth interviews with 24 survey respondents to explore these findings further. Survey responses were analysed using descriptive statistics and interview data were analysed thematically. The consent approach of the 100kGP resulted in a proportion of our study's participants not understanding the complexities of the project and what types of results they might receive; for example, 20% of participants who we surveyed from the cancer arm did not recall what decisions they had made regarding additional findings. It is not surprising that a project such as this, with such diverse aims and participant groups, would throw up at least some challenges. However, participants reported being satisfied with their experience of the project to date. Our study highlights that in the context of consent for more complex endeavours, such as the 100kGP, it is important to assess (and document) an agreement to take part, but complicated decisions about what and when to communicate may need revisiting over time in response to changing contexts. We discuss the implications of our findings with reference to participants of the 100kGP and the newly formed NHS Genomic Medicine Service.
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http://dx.doi.org/10.1038/s41431-019-0570-7DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7253456PMC
June 2020

Cry for health: a quantitative evaluation of a hospital-based advocacy intervention for domestic violence and abuse.

BMC Health Serv Res 2019 Oct 21;19(1):718. Epub 2019 Oct 21.

Domestic Violence/Abuse and Health Research Group (DVAHG), Centre for Academic Primary Care, Bristol Medical School, University of Bristol, Canynge Hall, 39 Whatley Road, Bristol, BS8 2PS, UK.

Background: Domestic violence and abuse (DVA) damages the health of survivors and increases use of healthcare services. We report findings from a multi-site evaluation of hospital-based advocacy services, designed to support survivors attending emergency departments and maternity services.

Methods: Independent Domestic Violence Advisors (IDVA) were co-located in five UK hospitals. Case-level data were collected at T1 (initial referral) and T2 (case closure) from survivors accessing hospital (T1 N = 692; T2 N = 476) and community IDVA services (T1 N = 3544; T2 N = 2780), used as a comparator. Measures included indicators of sociodemographic characteristics, experience of abuse, health service use, health and safety outcomes. Multivariate analyses tested for differences in changes in abuse, health and factors influencing safety outcomes. Health service use data in the 6 months pre-and post- intervention were compared to generate potential cost savings by hospital IDVA services.

Results: Hospital IDVAs worked with survivors less visible to community IDVA services and facilitated intervention at an earlier point. Hospital IDVAs received higher referrals from health services and enabled access to a greater number of health resources. Hospital survivors were more likely to report greater reductions in and cessation of abuse. No differences were observed in health outcomes for hospital survivors. The odds of safety increased two-fold if hospital survivors received over five contacts with an IDVA or accessed six or more resources / programmes over a longer period of time. Six months preceding IDVA intervention, hospital survivors cost on average £2463 each in use of health services; community survivors cost £533 each. The cost savings observed among hospital survivors amounted to a total of £2050 per patient per year. This offset the average cost of providing hospital IDVA services.

Conclusions: Hospital IDVAs can identify survivors not visible to other services and promote safety through intensive support and access to resources. The co-location of IDVAs within the hospital encouraged referrals to other health services and wider community agencies. Further research is required to establish the cost-effectiveness of hospital IDVA services, however our findings suggest these services could be an efficient use of health service resources.
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http://dx.doi.org/10.1186/s12913-019-4621-0DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6805459PMC
October 2019

Fostering trust in healthcare: Participants' experiences, views, and concerns about the 100,000 genomes project.

Eur J Med Genet 2019 May 29;62(5):335-341. Epub 2018 Nov 29.

Clinical Ethics and Law at Southampton (CELS), Faculty of Medicine University of Southampton, United Kingdom. Electronic address:

In this paper, we present findings from a project involving 20 patients with rare diseases, or parents thereof, participating in the 100,000 genomes project (100 kG P). We explored their experiences of, and views about, the project, including why they took part, and their hopes and concerns about the future of genomic medicine. Patients who attended genetic clinics for testing were offered the opportunity to undergo the more extensive whole genome sequencing (WGS) if they agreed to take part in the 100 kG P. Once people had agreed, a specific additional appointment was organised for them. Taking part in the project therefore involved additional travel and appointments ('clinical labour'). We found that interviewees' decisions to participate in 100 kG P were based on interpersonal and institutional trust in the NHS, and on an investment in improving care for the future. Interviewees relied upon receiving good ongoing NHS care for managing their own or their child's rare disease, but they worried about what their relationships with NHS healthcare professionals would be like in future. A few participants worried about whether Genomics England's biorepository would remain protected and an asset of the NHS. To honour and foster participants' trust - which may easily be lost - and their clinical labour, we therefore recommend ongoing public engagement and consultation about how genomics is being integrated more widely across specialties (especially given current funding and staffing constraints in the NHS) within the newly formed NHS Genomic Medicine Service.
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http://dx.doi.org/10.1016/j.ejmg.2018.11.024DOI Listing
May 2019

Recontacting patients in clinical genetics services: recommendations of the European Society of Human Genetics.

Eur J Hum Genet 2019 02 11;27(2):169-182. Epub 2018 Oct 11.

Clinical Genetics Department, Guy's & St. Thomas' NHS Foundation Trust, London, UK.

Technological advances have increased the availability of genomic data in research and the clinic. If, over time, interpretation of the significance of the data changes, or new information becomes available, the question arises as to whether recontacting the patient and/or family is indicated. The Public and Professional Policy Committee of the European Society of Human Genetics (ESHG), together with research groups from the UK and the Netherlands, developed recommendations on recontacting which, after public consultation, have been endorsed by ESHG Board. In clinical genetics, recontacting for updating patients with new, clinically significant information related to their diagnosis or previous genetic testing may be justifiable and, where possible, desirable. Consensus about the type of information that should trigger recontacting converges around its clinical and personal utility. The organization of recontacting procedures and policies in current health care systems is challenging. It should be sustainable, commensurate with previously obtained consent, and a shared responsibility between healthcare providers, laboratories, patients, and other stakeholders. Optimal use of the limited clinical resources currently available is needed. Allocation of dedicated resources for recontacting should be considered. Finally, there is a need for more evidence, including economic and utility of information for people, to inform which strategies provide the most cost-effective use of healthcare resources for recontacting.
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http://dx.doi.org/10.1038/s41431-018-0285-1DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6336881PMC
February 2019

Recontacting or not recontacting? A survey of current practices in clinical genetics centres in Europe.

Eur J Hum Genet 2018 07 23;26(7):946-954. Epub 2018 Apr 23.

Egenis, University of Exeter, Exeter, UK.

Advances in genomic medicine are improving diagnosis and treatment of some health conditions, and the question of whether former patients should be recontacted is therefore timely. The issue of recontacting is becoming more important with increased integration of genomics in 'mainstream' medicine. Empirical evidence is needed to advance the discussion over whether and how recontacting should be implemented. We administered a web-based survey to genetic services in European countries to collect information about existing infrastructures and practices relevant to recontacting patients. The majority of the centres stated they had recontacted patients to update them about new significant information; however, there were no standardised practices or systems in place. There was also a multiplicity of understandings of the term 'recontacting', which respondents conflated with routine follow-up programmes, or even with post-test counselling. Participants thought that recontacting systems should be implemented to provide the best service to the patients and families. Nevertheless, many barriers to implementation were mentioned. These included: lack of resources and infrastructure, concerns about potential negative psychological consequences of recontacting, unclear operational definitions of recontacting, policies that prevent healthcare professionals from recontacting, and difficulties in locating patients after their last contact. These barriers are also intensified by the highly variable development (and establishment) of the specialties of medical genetics and genetic counselling across different European countries. Future recommendations about recontacting need to consider these barriers. It is also important to reach an 'operational definition' that can be useful in different countries.
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http://dx.doi.org/10.1038/s41431-018-0131-5DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6018700PMC
July 2018

Towards a national genomics medicine service: the challenges facing clinical-research hybrid practices and the case of the 100 000 genomes project.

J Med Ethics 2018 06 1;44(6):397-403. Epub 2018 Mar 1.

Brighton and Sussex Medical School, Brighton, UK.

Clinical practice and research are governed by distinct rules and regulations and have different approaches to, for example, consent and providing results. However, genomics is an example of where research and clinical practice have become codependent. The 100 000 genomes project (100kGP) is a hybrid venture where a person can obtain a clinical investigation only if he or she agrees to also participate in ongoing research-including research by industry and commercial companies. In this paper, which draws on 20 interviews with professional stakeholders involved in 100kGP, we investigate the ethical issues raised by this project's hybrid nature. While some interviewees thought the hybrid nature of 100kGP was its vanguard, interviewees identified several tensions around hybrid practice: how to decide who should be able to participate; how to determine whether offering results might unduly influence participation into wide-ranging but often as yet unknown research and how to ensure that patients/families do not develop false expectations about receiving results. These areas require further debate as 100kGP moves into routine healthcare in the form of the national genomic medicine service. To address the tensions identified, we explore the appropriateness of Faden et al.'s framework of ethical obligations for when research and clinical care are completely integrated. We also argue that enabling ongoing transparent and trustworthy communication between patients/families and professionals around the kinds of research that should be permitted in 100kGP will help to understand and ensure that expectations remain realistic. Our paper aims to encourage a focused discussion about these issues and to inform a new 'social contract' for research and clinical care in the health service.
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http://dx.doi.org/10.1136/medethics-2017-104588DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5992369PMC
June 2018

Limitations and Pitfalls of Using Family Letters to Communicate Genetic Risk: a Qualitative Study with Patients and Healthcare Professionals.

J Genet Couns 2018 06 1;27(3):689-701. Epub 2017 Nov 1.

Clinical Ethics and Law, Southampton General Hospital, South Academic Block, University of Southampton, Room AB 203, MP 801, Tremona Road, Southampton, SO16 6YD, 02381 205082, UK.

European genetic testing guidelines recommend that healthcare professionals (HCPs) discuss the familial implications of any test with a patient and offer written material to help them share the information with family members. Giving patients these "family letters" to alert any relatives of their risk has become part of standard practice and has gone relatively unquestioned over the years. Communication with at-risk relatives will become an increasingly pressing issue as mainstream and routine practice incorporates broad genome tests and as the number of findings potentially relevant to relatives increases. This study therefore explores problems around the use of family letters to communicate about genetic risk. We conducted 16 focus groups with 80 HCPs, and 35 interviews with patients, recruited from across the UK. Data were analyzed thematically and we constructed four themes: 1) HCPs writing family letters: how to write them and why?, 2) Patients' issues with handing out family letters, 3) Dissemination becomes an uncontrolled form of communication, and 4) When the relative has the letter, is the patient's and HCP's duty discharged? We conclude by suggesting alternative and supplementary methods of communication, for example through digital tools, and propose that in comparison to communication by family letter, direct contact by HCPs might be a more appropriate and successful option.
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http://dx.doi.org/10.1007/s10897-017-0164-xDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5943374PMC
June 2018

Beyond individualism: Is there a place for relational autonomy in clinical practice and research?

Clin Ethics 2017 Sep 13;12(3):150-165. Epub 2017 Apr 13.

Department of Global Health & Social Medicine, Faculty of Social Science & Public Policy, King's College London, UK.

The dominant, individualistic understanding of autonomy that features in clinical practice and research is underpinned by the idea that people are, in their ideal form, independent, self-interested and rational gain-maximising decision-makers. In recent decades, this paradigm has been challenged from various disciplinary and intellectual directions. Proponents of 'relational autonomy' in particular have argued that people's identities, needs, interests - and indeed autonomy - are always also shaped by their relations to others. Yet, despite the pronounced and nuanced critique directed at an individualistic understanding of autonomy, this critique has had very little effect on ethical and legal instruments in clinical practice and research so far. In this article, we use four case studies to explore to what extent, if at all, relational autonomy can provide solutions to ethical and practical problems in clinical practice and research. We conclude that certain forms of relational autonomy can have a tangible and positive impact on clinical practice and research. These solutions leave the ultimate decision to the person most affected, but encourage and facilitate the consideration of this person's care and responsibility for connected others.
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http://dx.doi.org/10.1177/1477750917704156DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5603969PMC
September 2017

Healthcare professionals' and patients' perspectives on consent to clinical genetic testing: moving towards a more relational approach.

BMC Med Ethics 2017 Aug 8;18(1):47. Epub 2017 Aug 8.

Clinical Ethics and Law, University of Southampton, Southampton General Hospital, South Academic Block, Tremona Road, Southampton, SO16 6YD, UK.

Background: This paper proposes a refocusing of consent for clinical genetic testing, moving away from an emphasis on autonomy and information provision, towards an emphasis on the virtues of healthcare professionals seeking consent, and the relationships they construct with their patients.

Methods: We draw on focus groups with UK healthcare professionals working in the field of clinical genetics, as well as in-depth interviews with patients who have sought genetic testing in the UK's National Health Service (data collected 2013-2015). We explore two aspects of consent: first, how healthcare professionals consider the act of 'consenting' patients; and second how these professional accounts, along with the accounts of patients, deepen our understanding of the consent process.

Results: Our findings suggest that while healthcare professionals working in genetic medicine put much effort into ensuring patients' understanding about their impending genetic test, they acknowledge, and we show, that patients can still leave genetic consultations relatively uninformed. Moreover, we show how placing emphasis on the informational aspect of genetic testing is not always reflective of, or valuable to, patients' decision-making. Rather, decision-making is socially contextualised - also based on factors outside of information provision.

Conclusions: A more collaborative on-going consent process, grounded in virtue ethics and values of honesty, openness and trustworthiness, is proposed.
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http://dx.doi.org/10.1186/s12910-017-0207-8DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5549302PMC
August 2017

Recontacting in clinical practice: the views and expectations of patients in the United Kingdom.

Eur J Hum Genet 2017 10 2;25(10):1106-1112. Epub 2017 Aug 2.

Egenis, University of Exeter, Exeter, UK.

This paper explores the views and expectations of patients concerning recontacting in clinical practice. It is based on 41 semi-structured interviews conducted in the United Kingdom. The sample comprised patients or parents of patients: without a diagnosis; recently offered a test for a condition or carrier risk; with a rare condition; with a variant of unknown significance - some of whom had been recontacted. Participants were recruited both via the National Health Service (NHS) and through online, condition-specific support groups. Most respondents viewed recontacting as desirable, however there were different opinions and expectations about what type of new information should trigger recontacting. An awareness of the potential psychological impact of receiving new information led some to suggest that recontacting should be planned, and tailored to the nature of the new information and the specific situation of patients and families. The lack of clarity about lines of responsibility for recontacting and perceptions of resource constraints in the NHS tended to mitigate respondents' favourable positions towards recontacting and their preferences. Some respondents argued that recontacting could have a preventative value and reduce the cost of healthcare. Others challenged the idea that resources should be used to implement formalised recontacting systems - via arguments that there are 'more pressing' public health priorities, and for the need for healthcare services to offer care to new patients.
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http://dx.doi.org/10.1038/ejhg.2017.122DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5602023PMC
October 2017

A 'joint venture' model of recontacting in clinical genomics: challenges for responsible implementation.

Eur J Med Genet 2017 Jul 10;60(7):403-409. Epub 2017 May 10.

Clinical Ethics and Law, Faculty of Medicine, University of Southampton, UK; ELSI Group, Department of Genetics, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands; Wessex Clinical Genetics Service, University Hospital Southampton NHS Foundation Trust, UK.

Advances in genomics often lead healthcare professionals (HCPs) to learn new information, e.g., about reinterpreted variants that could have clinical significance for patients seen previously. A question arises of whether HCPs should recontact these former patients. We present some findings interrogating the views of patients (or parents of patients) with a rare or undiagnosed condition about how such recontacting might be organised ethically and practically. Forty-one interviews were analysed thematically. Participants suggested a 'joint venture' model in which efforts to recontact are shared with HCPs. Some proposed an ICT-approach involving an electronic health record that automatically alerts them to potentially relevant updates. The need for rigorous privacy controls and transparency about who could access their data was emphasised. Importantly, these findings highlight that the lack of clarity about recontacting is a symptom of a wider problem: the lack of necessary infrastructure to pool genomic data responsibly, to aggregate it with other health data, and to enable patients/parents to receive updates. We hope that our findings will instigate a debate about the way responsibilities for recontacting under any joint venture model could be allocated, as well as the limitations and normative implications of using ICT as a solution to this intractable problem. As a first step to delineating responsibilities in the clinical setting, we suggest HCPs should routinely discuss recontacting with patients/parents, including the new information that should trigger a HCP to initiate recontact, as part of the consent process for genetic testing.
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http://dx.doi.org/10.1016/j.ejmg.2017.05.001DOI Listing
July 2017

How do clinical genetics consent forms address the familial approach to confidentiality and incidental findings? A mixed-methods study.

Fam Cancer 2018 01;17(1):155-166

Clinical Ethics and Law, Faculty of Medicine, Southampton General Hospital, University of Southampton, Room AB 203, MP 801, South Academic Block, Tremona Road, Southampton, SO16 6YD, UK.

Genetic test results can be relevant to patients and their relatives. Questions thus arise around whether clinicians regard genetic information as confidential to individuals or to families, and about how they broach this and other issues, including the potential for incidental findings, in consent (forms) for genetic testing. We conducted a content analysis of UK-wide genetic testing consent forms and interviewed 128 clinicians/laboratory scientists. We found that almost all genetic services offered patients multiple, sometimes unworkable, choices on forms, including an option to veto the use of familial genetic information to benefit relatives. Participants worried that documented choices were overriding professional judgement and cautioned against any future forms dictating practice around incidental findings. We conclude that 'tick-box' forms, which do little to enhance autonomy, are masking valid consent processes in clinical practice. As genome-wide testing becomes commonplace, we must re-consider consent processes, so that they protects patients'-and relatives'-interests.
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http://dx.doi.org/10.1007/s10689-017-9994-9DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5770491PMC
January 2018

Approaching confidentiality at a familial level in genomic medicine: a focus group study with healthcare professionals.

BMJ Open 2017 02 3;7(2):e012443. Epub 2017 Feb 3.

Faculty of Medicine, Clinical Ethics and Law, University of Southampton, Southampton General Hospital, Southampton, UK.

Objectives: Clinical genetics guidelines from 2011 conceptualise genetic information as confidential to families, not individuals. The normative consequence of this is that the family's interest is the primary consideration and genetic information is shared unless there are good reasons not to do so. We investigated healthcare professionals' (HCPs') views about, and reasoning around, individual and familial approaches to confidentiality and how such views influenced their practice.

Method: 16 focus groups with 80 HCPs working in/with clinical genetics services were analysed, drawing on grounded theory.

Results: Participants raised seven problems with, and arguments against, going beyond the individual approach to confidentiality. These problems fell into two overlapping categories: 'relationships' and 'structures'. Most participants had never considered ways to-or thought it was impossible to-treat familial genetic information and personal information differently. They worried that putting the familial approach into practice could disrupt family dynamics and erode patient trust in the health service. They also thought they had insufficient resources to share information and feared that sharing might change the standard of care and make them more vulnerable to liability.

Conclusions: A familial approach to confidentiality has not been accepted or adopted as a standard, but wider research suggests that some of the problems HCPs perceived are surmountable and sharing in the interest of the family can be achieved. However, further research is needed to explore how personal and familial genetic information can be separated in practice. Our findings are relevant to HCPs across health services who are starting to use genome tests as part of their routine investigations.
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http://dx.doi.org/10.1136/bmjopen-2016-012443DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5293977PMC
February 2017

Recontacting in clinical practice: an investigation of the views of healthcare professionals and clinical scientists in the United Kingdom.

Eur J Hum Genet 2017 02 4;25(3):275-279. Epub 2017 Jan 4.

Egenis, University of Exeter, Exeter, UK.

This article explores the views and experiences of healthcare professionals and clinical scientists in genetics about the existence of a duty and/or responsibility to recontact former patients when the genetic information relevant to their health, or that of family members, changes in a potentially important manner. It is based on N=30 semi-structured interviews guided by vignettes of recontacting scenarios. The sample included healthcare professionals in the United Kingdom from different medical specialties (clinical genetics, other 'mainstream' specialties now offering genetic testing), and scientists from regional genetics laboratories. While viewing recontacting as desirable under certain circumstances, most respondents expressed concerns about its feasibility within the current constraints of the National Health Service (NHS). The main barriers identified were insufficient resources (time, staff, and suitable IT infrastructures) and lack of clarity about role boundaries and responsibilities. All of these are further complicated by genetic testing being increasingly offered by mainstream specialties. Reaching a consensus about roles and responsibilities of clinical specialties with regard to recontacting former patients in the light of evolving genetic information, and about what resources and infrastructures would be needed, was generally seen as a pre-requisite to developing guidelines about recontact.
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http://dx.doi.org/10.1038/ejhg.2016.188DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5315519PMC
February 2017

Predictive Genetic Testing of Children for Adult-Onset Conditions: Negotiating Requests with Parents.

J Genet Couns 2017 Apr 28;26(2):244-250. Epub 2016 Sep 28.

Clinical Ethics and Law, Faculty of Medicine, University of Southampton, Southampton, SO165YA, UK.

Healthcare professionals (HCPs) regularly face requests from parents for predictive genetic testing of children for adult-onset conditions. Little is known about how HCPs handle these test requests, given that guidelines recommend such testing is deferred to adulthood unless there is medical benefit to testing before that time. Our study explored the process of decision-making between HCPs and parents. Semi-structured interviews were conducted with 34 HCPs in 8 regional genetic services across the UK, and data were thematically analysed. We found that instead of saying 'yes' or 'no' to such requests, many HCPs framed the consultation as an opportunity to negotiate the optimal time of testing. This, they argued, facilitates parents' considered decision-making, since parents' eventual decisions after requesting a test was often to defer testing their child. In cases where parents' requests remained a sustained wish, most HCPs said they would agree to test, concluding that not testing would not serve the child's wider best interest. As a strategy for determining the child's best interest and for facilitating shared decision-making, we recommend that HCPs re-frame requests for testing from parents as a discussion about the optimal time of testing for adult-onset disease.
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http://dx.doi.org/10.1007/s10897-016-0018-yDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5382176PMC
April 2017

Recontact in clinical practice: a survey of clinical genetics services in the United Kingdom.

Genet Med 2016 09 18;18(9):876-81. Epub 2016 Feb 18.

Egenis, University of Exeter, Exeter, UK.

Purpose: To ascertain whether and how recontacting occurs in the United Kingdom.

Method: A Web-based survey was administered online between October 2014 and July 2015. A link to the survey was circulated via an e-mail invitation to the clinical leads of the United Kingdom's 23 clinical genetics services, with follow-up with senior clinical genetics staff.

Results: The majority of UK services reported that they recontact patients and their family members. However, recontacting generally occurs in an ad hoc fashion when an unplanned event causes clinicians to review a file (a "trigger"). There are no standardized recontacting practices in the United Kingdom. More than half of the services were unsure whether formalized recontacting systems should be implemented. Some suggested greater patient involvement in the process of recontacting.

Conclusion: This research suggests that a thorough evaluation of the efficacy and sustainability of potential recontacting systems within the National Health Service would be necessary before deciding whether and how to implement such a service or to create guidelines on best-practice models.Genet Med 18 9, 876-881.
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http://dx.doi.org/10.1038/gim.2015.194DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5052431PMC
September 2016

'Is this knowledge mine and nobody else's? I don't feel that.' Patient views about consent, confidentiality and information-sharing in genetic medicine.

J Med Ethics 2016 Mar 7;42(3):174-9. Epub 2016 Jan 7.

Clinical Ethics and Law, Faculty of Medicine, University of Southampton, Southampton, UK Wessex Clinical Genetics Service, University Hospital Southampton NHS Foundation Trust.

In genetic medicine, a patient's diagnosis can mean their family members are also at risk, raising a question about how consent and confidentiality should function in clinical genetics. This question is particularly pressing when it is unclear whether a patient has shared information. Conventionally, healthcare professionals view confidentiality at an individual level and 'disclosure without consent' as the exception, not the rule. The relational joint account model, by contrast, conceptualises genetic information as confidential at the familial level and encourages professionals to take disclosure as the default position. In this study, we interviewed 33 patients about consent and confidentiality and analysed data thematically. Our first theme showed that although participants thought of certain aspects of genetic conditions--for example, the way they affect day-to-day health--as somewhat personal, they perceived genetic information--for example, the mutation in isolation--as familial. Most thought these elements were separable and thought family members had a right to know the latter, identifying a broad range of harms that would justify disclosure. Our second theme illustrated that participants nonetheless had some concerns about what, if any, implications there would be of professionals treating such information as familial and they emphasised the importance of being informed about the way their information would be shared. Based on these results, we recommend that professionals take disclosure as the default position, but make clear that they will treat genetic information as familial during initial consultations and address any concerns therein.
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http://dx.doi.org/10.1136/medethics-2015-102781DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4789809PMC
March 2016

What results to disclose, when, and who decides? Healthcare professionals' views on prenatal chromosomal microarray analysis.

Prenat Diagn 2016 Mar 17;36(3):252-9. Epub 2016 Feb 17.

Clinical Ethics and Law, Faculty of Medicine, University of Southampton, Southampton, UK.

Objectives: This study explored the views of healthcare professionals (HCPs) in the UK about what information should be disclosed, when; and whether women/parents should be given a choice as to what they wish to know.

Methods: Q-methodology was used to assess the views of 40 HCPs (genetic HCPs, fetal medicine experts, lab-scientists).

Results: Most participants agreed that variants of unknown clinical significance should not be disclosed. Participants were divided between those who considered variants of uncertain clinical significance helpful for parents and clinicians, and those who considered them harmful. Although recognising the potential disadvantages of disclosing risks for adult-onset conditions, participants thought it would be difficult to withhold such information once identified. Participants largely supported some parental involvement in determining which results should be returned. Most participants believed that information obtained via CMA testing in pregnancy should either be disclosed during pregnancy, or not at all.

Conclusion: HCPs taking part in the study largely believed that variants that will inform the management of the pregnancy, or are relevant to other family members, should be reported. Recent UK guidelines, published after this research was completed, reflect these opinions.
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http://dx.doi.org/10.1002/pd.4772DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5067646PMC
March 2016

Health-care professionals' responsibility to patients' relatives in genetic medicine: a systematic review and synthesis of empirical research.

Genet Med 2016 Apr 25;18(4):290-301. Epub 2015 Jun 25.

Clinical Ethics and Law, University of Southampton, Southampton, UK.

Purpose: The extent of the responsibility of health-care professionals (HCPs) to ensure that patients' relatives are told of their risk is unclear. Current international guidelines take confidentiality to the individual patient as the default position, but some suggest that disclosure could be default and genetic information could be conceptualized as familial.

Methods: Our systematic review and synthesis of 17 studies explored the attitudes of HCPs, patients, and the public regarding the extent of HCPs' responsibility to relatives with respect to disclosure.

Results: Health-care professionals generally felt a responsibility to patients' relatives but perceived a variety of reasons why it would be difficult to act on this responsibility. Public/patient views were more wide-ranging. Participants identified several competing and overlapping arguments for and against HCP disclosure: guidelines do not permit/mandate it, privacy, medical benefit, impact on family dynamics, quality of communication, and respecting autonomy.

Conclusion: We argue that HCPs can sometimes share genetic information without breaching confidentiality and that they could factor into their considerations the potential harm to family dynamics of nondisclosure. However, we need more nuanced research about their responsibilities to relatives, particularly as genomic tests are used more frequently in clinical practice.Genet Med 18 4, 290-301.
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http://dx.doi.org/10.1038/gim.2015.72DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4823639PMC
April 2016

Rescue obligations and collective approaches: complexities in genomics.

Am J Bioeth 2015 ;15(2):23-5

a Clinical Ethics and Law , University of Southampton.

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http://dx.doi.org/10.1080/15265161.2014.990763DOI Listing
October 2015

Genetic testing of children for adult-onset conditions: opinions of the British adult population and implications for clinical practice.

Eur J Hum Genet 2015 Oct 5;23(10):1281-5. Epub 2014 Nov 5.

Clinical Ethics and Law at Southampton (CELS), Academic Department of Clinical Genetics, Faculty of Medicine, University of Southampton, Southampton, UK.

This study set out to explore the attitudes of a representative sample of the British public towards genetic testing in children to predict disease in the future. We sought opinions about genetic testing for adult-onset conditions for which no prevention/treatment is available during childhood, and about genetic 'carrier' status to assess future reproductive risks. The study also examined participants' level of agreement with the reasons professional organisations give in favour of deferring such testing. Participants (n=2998) completed a specially designed questionnaire, distributed by email. Nearly half of the sample (47%) agreed that parents should be able to test their child for adult-onset conditions, even if there is no treatment or prevention at time of testing. This runs contrary to professional guidance about genetic testing in children. Testing for carrier status was supported by a larger proportion (60%). A child's future ability to decide for her/himself if and when to be tested was the least supported argument in favour of deferring testing.
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http://dx.doi.org/10.1038/ejhg.2014.221DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4592073PMC
October 2015

What do men want from antenatal screening? Findings from an interview study in England.

Midwifery 2015 Jan 6;31(1):208-14. Epub 2014 Sep 6.

Florence Nightingale School of Nursing and Midwifery, King׳s College London, UK.

Objective: in the UK, midwives are facing a policy-drive to include men in antenatal care, and men will soon receive paternity leave to enable their involvement. As a result, more men will be able to attend screening, support women and participate in decision-making. We therefore conducted a timely exploration of what being involved means for men and what they want from antenatal screening and midwives.

Design And Setting: in-depth, semi-structured interviews with 12 men were carried out, mostly by telephone. Data were analysed using grounded theory.

Findings: we constructed three themes and showed that (1) in normal pregnancies, men knew little about screening, and were happy for midwives to take control during appointments, (2) in complicated pregnancies, men wanted to be more actively involved but some perceived that they faced suspicions of being coercive if voicing opinions, and (3) over time, men became more adept at communicating with midwives, but some disengaged from screening because of poor communication with midwives and/or a lack of faith in the benefits of screening.

Conclusion: findings build on other studies to highlight the multiplicity of roles men play during screening. For men and women to reap the benefits of men's involvement in antenatal screening, good communication is required between midwives and couples. Communication training could help to improve care delivery and the relationships between men, women and midwives.
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http://dx.doi.org/10.1016/j.midw.2014.08.011DOI Listing
January 2015

Defining and managing incidental findings in genetic and genomic practice.

J Med Genet 2014 Nov 16;51(11):715-23. Epub 2014 Sep 16.

Wessex Clinical Genetic Service Faculty of Medicine, Clinical Ethics and Law at Southampton (CELS), University of Southampton, Southampton, UK.

The rapidly declining costs and increasing speeds of whole-genome analysis mean that genetic testing is undergoing a shift from targeted approaches to broader ones that look at the entire genome. As whole-genome technologies gain widespread use, questions about the management of so-called incidental findings-those unrelated to the question being asked-need urgent consideration. In this review, we bring together current understanding and arguments about (1) appropriate terminology, (2) the determination of clinical utility and when to disclose incidental findings, (3) the differences in management and disclosure in clinical, research and commercial contexts and (4) ethical and practical issues about familial implications and recontacting those tested. We recommend that greater international consensus is developed around the disclosure and management of incidental findings, with particular attention to when, and how, less clear-cut results should be communicated. We suggest that there is no single term that captures all the issues around these kinds of findings and that different terms may, therefore, need to be used in different settings. We also encourage the use of clear consent processes, but suggest that the absence of consent should not always preclude disclosure. Finally, we recommend further research to identify ways to implement the use of a genome output as a resource, accessible over time, to facilitate appropriate disclosure and recontact when the significance of a previously unclear incidental finding is clarified.
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http://dx.doi.org/10.1136/jmedgenet-2014-102435DOI Listing
November 2014
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