Practising genomics ethically – is more guidance really the answer?

By Kate Sahan and Kate Lyle.

As genomic medicine advances, so too its volume and range of ethical considerations expands. Last month, the Nuffield Council on Bioethics published a report entitled “Towards a gold standard of ethics in genomic healthcare and research: where are we?”  The report mapped existing ethics resources in place to support the practice of ethical genomic healthcare and research. It concluded that ‘new resources [are needed] that address the gaps identified, as well as building on and providing consistency across existing resources (if inconsistencies arise)’, also noting that reaching ‘consensus’ is important to reach a gold standard of ethical genomic practice.

The report is a clear, comprehensive one stop shop for accessing the most up to date ethics guidance and frameworks related to genomics in the UK. However, it begs two questions:

  • what should be the aims of a gold standard approach to ethical genomic practice?
  • will more resources (e.g. ethics guidance, frameworks) be enough to meet those aims?

Our recent study explores laboratory scientists’ perspectives on the ethical issues that genomics raises within their practice, capturing their views at a special meeting of the UK Genethics Forum. In some respects, our findings align with the report. Laboratory scientists felt their roles and responsibilities to patients were shifting and expanding. They grappled with how to interpret and communicate results to patients and healthcare professionals, particularly when handling cases that had not been directed through the genetics service but were referred from other departments. Participants tended to view their experiences as evidence of the need for more guidance and policies that would offer clearer instructions on managing ethical issues and establish a standardised approach.

Yet, in other regards, our findings contrast with the Council’s conclusions, particularly the implication that consistency and consensus make for high quality ethical practice in genomic medicine. Though we agree ethics resources on similar ethics topics should be broadly consistent with one another, striving for consistency in what is ethically acceptable in practice starts to looks problematic. This is even though we might think consistency is important in some practical cases e.g. to make sure two patients have access to the same standard of treatment. However, we should also acknowledge that inconsistency in ethical judgments is a reality: two similar cases might well provoke different yet ethically justified decisions, due to contextual factors. Similarly, consensus may not be required in every ethical decision: we might reasonably disagree about the appropriate approach to take, but we might be able to live with that decision, providing we have been part of a fair decision-making process.

Furthermore, written ethics resources, while essential for providing information about ethics, cannot and should not dictate specific courses of action to resolve ethical issues that arise in practice. Instead, we need move away from thinking about ethics resources as a set of instructions or manuals we should comply with, towards the idea that they are to inform and support practices of ethical decision-making. This is as part of a broader focus on empowering healthcare professionals to work through ethical issues as they arise in practice. We describe this kind of approach, in which healthcare professionals are supported to feel willing and able to work in morally appropriate ways, as ‘ethical preparedness’. This ability to implement and ‘embed’ ethics well and confidently into practice is acknowledged in the Council’s report in its short section on ‘Ethics across genomics’ (see p14), but we think deserves much greater emphasis and organisational attention.

Ethical preparedness (EP) is ‘a state [for identifying and articulating] ethical issues in a timely and ongoing manner’ with ideally the tools and skills to address them’, and rather than focusing on compliance, encourages professionals to develop skills to consider ethical issues with confidence, and calls on organisations to prioritise the time and space for quality ethical discussion and deliberation within day to day practice. EP incorporates and encourages the production and use of high quality ethics resources, education (e.g. https://www.genomicseducation.hee.nhs.uk/) and formal deliberation settings, such as UK Genethics. Only with this multi-pronged approach can the UK government’s vision for a gold standard approach to genomics, including ethics, be realised.

 

Paper title: Ethical Preparedness in Genomic Medicine: How NHS clinical scientists navigate ethical issues

Authors: Kate Sahan1, Kate Lyle2, Helena Carley3,4, Nina Hallowell1, Michael Parker1, Anneke Lucassen2,3,5

Affiliations:

1 Ethox Centre, University of Oxford Nuffield Department of Population Health, Oxford, UK

2 Wellcome Trust Centre for Human Genetics, Oxford, UK

3 Clinical Ethics, Law, and Society (CELS) Oxford, Nuffield Dept of Medicine, University of Oxford, Oxford, UK

4 South East Thames Regional Genetics Service, Guy’s & St Thomas NHS Foundation Trust, London, UK

5 Centre for Personalised Medicine, University of Oxford, Oxford, UK

Competing interests: None declared

Social media accounts of post author: linkedin.com/in/katherine-sahan-203024273

@kvlyle @cels_uos @eppigen

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