Heritable genome editing: action needed to secure responsible way forward

By Nuffield Foundation

The Nuffield Council on Bioethics, an independent body funded by the Nuffield Foundation, Wellcome and the MRC, publishes report on the ethical and social issues of genome editing and human reproduction.

The report concludes that editing the DNA of a human embryo, sperm or egg to influence the characteristics of a future person (‘heritable genome editing’) could be morally permissible. If that is to happen, a number of measures would first need to be put in place in order to ensure that genome editing proceeds in ways that are ethically acceptable.

The technique of genome editing – the deliberate alteration of a targeted DNA sequence in a living cell – could theoretically be used in assisted reproduction to alter the DNA of a human embryo, before it is transferred to the womb. This is not currently lawful in the UK, but could, in time, become available as an option for parents who wish to influence the genetic characteristics of their future child (for example, to exclude a heritable disease or a predisposition to cancer in later life).

The Council says that the possibilities raised by this radical new approach to reproductive choices could have significant implications for individuals and for all of society, and there must be action now to support public debate and to put in place appropriate governance.

The new report, Genome editing and human reproduction: social and ethical issues, sets out the range of ethical issues that arise in relation to the prospect of genome editing becoming available as a reproductive option for prospective parents.

The Council recommends that two overarching principles should guide the use of ‘heritable genome editing interventions’ for them be ethically acceptable:

  • they must be intended to secure, and be consistent with, the welfare of the future person; and
  • they should not increase disadvantage, discrimination or division in society

The Council further recommends that heritable genome editing interventions should be permitted only when:

  • there has been a sufficient opportunity for broad and inclusive public debate about its use and possible implications
  • further research has been carried out to establish standards of clinical safety
  • the risks of adverse effects for individuals, groups and society as a whole have been appropriately assessed and measures are in place to monitor and review these

It adds that, if it were to be permitted, it should be:

  • strictly regulated (by the HFEA in the UK)
  • introduced only in the context of a clinical study, with monitoring of the long-term effects on individuals and groups
  • licensed on a case-by-case basis
Further recommendations

In addition to these measures, the Council recommends the establishment of an independent body in the UK to promote broad and inclusive societal debate on heritable genome editing interventions and related scientific and medical developments.

Professor Karen Yeung, Chair of the working party and Professor of Law, Ethics, and Informatics at the University of Birmingham, said:

“There is potential for heritable genome editing interventions to be used at some point in the future in assisted human reproduction, as a means for people to secure certain characteristics in their children. Initially, this might involve preventing the inheritance of a specific genetic disorder. However, if the technology develops it has potential to become an alternative strategy available to parents for achieving a wider range of goals.”

Other reproductive options that are currently available to prospective parents who face the possibility of passing on an inherited genetic disorder, which genome editing might be considered alongside, include pre-implantation genetic diagnosis, which involves testing embryos for genetic characteristics and selecting one/s with preferred characteristics.

Although the UK is one of the countries that permits research on human embryos, the law does not currently permit genome editing interventions on embryos that are to be placed in a womb. The law would therefore have to be changed in order to allow the use of genome editing embryos, sperm or eggs for reproduction.

The Council’s report sets out the ethical considerations raised by the prospect of heritable genome editing interventions in relation to the interests of the people who would be affected by its use, of others in society who may be indirectly affected, and of human beings in general. One of the main reasons heritable genome editing interventions are controversial is that changes may be passed on to future generations.

Professor Dave Archard, Chair of the Nuffield Council on Bioethics said:

“Huge advances are happening in genomics research, and whilst we have to acknowledge that genes alone do not shape a person, the possibility of using genome editing in reproduction to secure or avoid a characteristic in a child offers a radically new approach that is likely to appeal to some prospective parents.

There may be good reasons for allowing some parental preferences to be met, but we need to be careful that the use of genome editing to help parents to exercise these preferences doesn’t increase social disadvantage, discrimination or division and that close attention is paid to the welfare of those involved, especially any child born as a result.”

NOTES TO EDITORS

This press release has been issued by the Nuffield Council on Bioethics. For enquiries, please contact:

Sarah Walker-Robson,
Communications Manager
Nuffield Council on Bioethics
swalker-robson@nuffieldbioethics.org

(+44) 0207 681 9619 / (+44) 07551 159670

About genome editing
Genome editing is the deliberate alteration of a selected DNA sequence in a living cell. Genome editing techniques can be used to alter how a gene functions, for example, by changing a variant of a gene that may give rise to disease to one that does not. CRISPR-Cas9 is an example of a method of genome editing that is now widely used in research.

Heritable genome editing interventions are interventions made to sperm, egg or embryo cells (or their precursors). The ‘edited’ DNA sequence would be present in all cells of any future person grown from those cells – including their own sperm or eggs – so may be passed on, in turn, to future generations).

About the project
This inquiry was initiated following publication of the Nuffield Council on Bioethics’ previous report Genome editing: an ethical review, in 2016. The development of genome editing applications in human reproduction was one of the areas identified in that review as requiring further ethical scrutiny.

This inquiry was carried out by an interdisciplinary working party that included members with expertise in biology, human reproduction, genome editing, law, and ethics.

To inform its deliberations, the working party received contributions from a wide range of people, including through an open call for evidence, an online questionnaire, and a series of fact-finding meetings and panel interviews.

About the working party
Members of the working party were appointed for their personal knowledge and expertise, and do not necessarily represent the views of their organisations.

Karen Yeung (Chair), Interdisciplinary Professorial Fellow in Law, Ethics and Informatics, University of Birmingham

Richard Ashcroft, Professor of Bioethics, Queen Mary University of London

Neva Haites, Professor of Medical Genetics, University of Aberdeen

Joyce Harper, Professor in Human Genetics and Embryology, University College London

Julian Hitchcock, Partner, Marriott Harrison LLP

Jackie Leach Scully, Professor of Social Ethics and Bioethics, PEALS (Policy, Ethics and Life Sciences) Research Centre, Newcastle University

Tony Perry, Professor of Mammalian Molecular Embryology, University of Bath

Christine Watson, Professor of Cell and Cancer Biology, University of Cambridge and Member of the Nuffield Council on Bioethics

About the Nuffield Council on Bioethics
The Nuffield Council on Bioethics examines ethical issues raised by new developments in biology and medicine. Established by the Nuffield Foundation in 1991, the Council is an independent body, funded jointly by the Foundation, the Medical Research Council and the Wellcome Trust. The Council has achieved an international reputation for addressing public concerns, and providing independent advice to assist policy makers and stimulate debate in bioethics.

By Nuffield Foundation

Explore our projects

New

Welfare | 2024 - 2027

Gypsy, Roma, Traveller Youth: mitigating exclusions using the digital?

View project
A front view of a father and his two children. He is carrying his young son in his arms and his daughter is riding her scooter along the footpath as he pushes his son's scooter along the way.
New

Justice | Welfare | 2024 - 2026

Challenging justice inequalities with children in conflict with the law 

View project
New

Welfare | 2024 - 2027

Performance Tracker 

View project
Mother wearing hijab holding her toddler son on her knee, smiling at each other
New

Welfare | 2024 - 2025

Afghan resettlement in England: outcomes and experiences 

View project
A woman is sat on the edge of a bed staring at her phone while her daughter is in the background.
In progress

Welfare | 2023 - 2025

Virtual parent support portals: a new research and practice agenda

View project
A middle-aged man sat at home is looking at this phone while sorting pension paperwork.
New

Welfare | 2023 - 2025

Collective defined contribution pensions with investment choice

View project
three women walking along street laughing and smiling
New

Welfare | 2023 - 2025

Revealing social capital

View project
New

Welfare | 2023 - 2026

Universal Credit, good work and progression

View project
Three colleagues smiling and talking at work
New

Welfare | 2023 - 2026

Arthritis, work and wellbeing: a mixed methods study with policy recommendations

View project
Elderly woman and adult daughter out shopping
In progress

Welfare | 2023 - 2026

Connecting pensions, health and care

View project
A group of neighbours walking outside in a green space

Welfare | 2023 - 2026

Just neighbourhoods? Under-representation in UK community-led planning

View project
Teenager hugging their mother
In progress

Welfare | 2023 - 2026

The long-term effects of being a young carer

View project
A front view of a father and his two children. He is carrying his young son in his arms and his daughter is riding her scooter along the footpath as he pushes his son's scooter along the way.
New

Justice | Welfare | 2024 - 2026

Challenging justice inequalities with children in conflict with the law 

View project
New

Welfare | 2024 - 2027

Gypsy, Roma, Traveller Youth: mitigating exclusions using the digital?

View project
New

Welfare | 2024 - 2027

Performance Tracker 

View project
Mother wearing hijab holding her toddler son on her knee, smiling at each other
New

Welfare | 2024 - 2025

Afghan resettlement in England: outcomes and experiences 

View project
three women walking along street laughing and smiling
New

Welfare | 2023 - 2025

Revealing social capital

View project
A middle-aged man sat at home is looking at this phone while sorting pension paperwork.
New

Welfare | 2023 - 2025

Collective defined contribution pensions with investment choice

View project
New

Welfare | 2023 - 2026

Universal Credit, good work and progression

View project
A woman is sat on the edge of a bed staring at her phone while her daughter is in the background.
In progress

Welfare | 2023 - 2025

Virtual parent support portals: a new research and practice agenda

View project
A group of neighbours walking outside in a green space

Welfare | 2023 - 2026

Just neighbourhoods? Under-representation in UK community-led planning

View project
People looking at their mobile phones while waiting for job interview

Welfare | 2023 - 2024

Reliability and validity of crowdsourced workplace wellbeing data

View project
Teenager hugging their mother
In progress

Welfare | 2023 - 2026

The long-term effects of being a young carer

View project
Elderly woman and adult daughter out shopping
In progress

Welfare | 2023 - 2026

Connecting pensions, health and care

View project
A woman is sat on the edge of a bed staring at her phone while her daughter is in the background.
In progress

Welfare | 2023 - 2025

Virtual parent support portals: a new research and practice agenda

View project
Teenager hugging their mother
In progress

Welfare | 2023 - 2026

The long-term effects of being a young carer

View project
Elderly woman and adult daughter out shopping
In progress

Welfare | 2023 - 2026

Connecting pensions, health and care

View project
Mother, father, son and daughter standing in front of their house
In progress

Welfare | 2023 - 2025

A regional regeneration index to track socioeconomic ‘Levelling Up’

View project
Man working on a laptop using sign language on a video call
In progress

Welfare | 2023 - 2024

Designing inclusive remote and hybrid working to support disabled workers

View project
Children walking with their parents in the countryside
In progress

Welfare | 2022 - 2024

Children’s lives in changing places

View project
Older man working from home on a video call
In progress

Welfare | 2022 - 2023

The impact of pension auto-enrolment and COVID-19 on saving behaviours

View project
Worried woman alone in a room, resting her head on her arms
In progress

Welfare | 2022 - 2024

Links between cognitive impairment and exploitation in England

View project
A man working as a delivery driver sits in the driver's seat, checking his list on a tablet
In progress

Welfare | 2022 - 2023

Redesigning labour market policies for the future of work

View project
Older people drinking tea at a meeting at a community centre
In progress

Welfare | 2022 - 2024

Using administrative data to understand community well-being

View project
Two cheerful farmers standing outside a farm building looking at a tablet
In progress

Welfare | 2022 - 2024

Rural assets: policy and practice insights from the devolved nations

View project
A group of women walk in a park with their children in pushchairs
In progress

Welfare | 2022 - 2024

Nature-based integration: connecting communities with/in nature

View project
New

Welfare | 2024 - 2027

Gypsy, Roma, Traveller Youth: mitigating exclusions using the digital?

View project
New

Welfare | 2024 - 2027

Performance Tracker 

View project
Mother wearing hijab holding her toddler son on her knee, smiling at each other
New

Welfare | 2024 - 2025

Afghan resettlement in England: outcomes and experiences 

View project
three women walking along street laughing and smiling
New

Welfare | 2023 - 2025

Revealing social capital

View project
A middle-aged man sat at home is looking at this phone while sorting pension paperwork.
New

Welfare | 2023 - 2025

Collective defined contribution pensions with investment choice

View project
New

Welfare | 2023 - 2026

Universal Credit, good work and progression

View project
Three colleagues smiling and talking at work
New

Welfare | 2023 - 2026

Arthritis, work and wellbeing: a mixed methods study with policy recommendations

View project
A man driving a van at work
New

Welfare | 2023 - 2025

The PAW Trial: feasibility and acceptability of the Pain-at-Work Toolkit

View project
Two older women swimming in their local pool
New

Welfare | 2023 - 2025

The psychological, social and economic impact of musculoskeletal conditions

View project
Older woman using a tablet to make a video call
New

Welfare | 2023 - 2025

Remote osteoarthritis peer-mentorship for socioeconomically underserved people

View project
Teenager hugging their mother
New

Welfare | 2023 - 2025

Juvenile onset rheumatic diseases: education, vocational readiness, & employment

View project
Older woman at work using a laptop
New

Welfare | 2023 - 2026

Extending working lives for people with musculoskeletal conditions

View project
Grandparents having fun outdoors with their granddaughter, who is eating an apple and laughing: Understanding family and community vulnerabilities in transition to net zero
Reported

Welfare | 2021 - 2023

Understanding family and community vulnerabilities in transition to net zero

View project
Father and son using laptop at home
Reported

Welfare | 2021 - 2024

Developing a minimum digital living standard for households with children

View project
Close up of a young girl and her father wearing protective face masks during the COVID-19 pandemic outside.
Reported

Welfare | 2021 - 2023

The Economy 2030 Inquiry: navigating a decade of change

View project
Toddler-gleefully-eats-baked-beans-How-COVID-19-is-affecting-food-security-proj
Reported

Welfare | 2020 - 2021

How the COVID-19 crisis is affecting food security

View project
Teenage-girl-looks-at-smartphone-next-to-laptop-Growing-up-under-COVID-19-PROJ
Reported

Education | Welfare | 2020 - 2022

Growing up under COVID-19

View project
Mother carrying daughter outside their home
Reported

Welfare | 2020 - 2022

COVID realities: families on low incomes during the pandemic

View project
Woman-looks-at-smartphone-screen-How-the-UK-public-gets-information-about-COVID-19-PROJ
Reported

Welfare | 2020 - 2020

How the UK public gets information about COVID-19

View project
Woman-medical-professional-treats-patient-impact-MSK-conditions-outcomes-other-illnesses-PROJ
Reported

Welfare | 2020 - 2022

The impact of musculoskeletal conditions on outcomes of other illnesses

View project
A middle-aged teacher sits at her desk and helps a female student with a problem in her textbook.
Reported

Education | Welfare | 2020 - 2020

Measuring the disadvantage attainment gap in 16-19 education

View project
Reported

Welfare | 2013 - 2017

IFS Green Budget 2013 – 2016

View project
Reported

Welfare | 2013 - 2016

Data about fathers in birth cohort studies (Life Study)

View project
Reported

Welfare | 2017 - 2017

General Election 2017

View project
Search projects

We improve people’s lives by funding research that informs social policy, primarily in Education, Welfare and Justice. We also fund student programmes that give young people skills and confidence in science and research.

We offer our grant-holders the freedom to frame questions and enable new thinking. Our research must stand up to rigorous academic scrutiny, but we understand that to be successful in effecting change, it also needs to be relevant to people’s experience.

Profile