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Global Genetic Policy Responsibilities and Assisted Reproduction

The US continues to revisit its policy on three-person IVF and human genome modification. On Tuesday 4 June 2019, the US House Appropriations Committee restored the ban on human genome modification to the draft 2020 federal spending bill which had been removed by a sub-committee on 23 May 2019. This marks a return to conservative policy which has operated in the US since 2015 and bans the Food and Drug Administration (FDA) from considering clinical trials that create or modify the human genome.

This policy reversal was led by Republican Robert Aderholt who introduced the ban in 2015. It reflects significant concerns amongst US policy makers that there are still too many risks and unknowns associated with human genome modification. At the same time, some Democrats called for Congress to have a separate and full debate about the scientific and wider issues associated with this scientific technology.

Britain became the first country in the world to approve the use of three-person IVF in 2015.This followed considered political debate as well as careful assessment by the Human Fertilisation and Embryology Authority (‘HFEA’). In 2018, the HFEA went on to give permission for the Newcastle Fertility Centre to carry out three-person IVF to help two women conceive a healthy child. Both women are understood to suffer from a serious hereditary and degenerative condition called Merrf syndrome, which affects around one in 100,000 people and causes loss of muscle control, dementia and early death.

The UK position on three-person IVF represents progressive law and policy in this area. At the same time, there are checks and balances in place and the HFEA has made clear this technology will be used cautiously on a case-by-case basis for a small number of people affected by rare genetic diseases.

It remains to be seen what the legacy of this technology will be across the world. In April 2019, there was media coverage that a baby had been born in Greece using the three-person IVF technique. It also follows coverage of a Chinese scientist who created gene-edited twin girls in November 2018 with the aim of making them resistant to HIV rather than to prevent an inherited genetic disease.

Whichever pathway the US ultimately adopts, in determining future law and policy it is important that it takes time to carefully and thoroughly debate and assess human genome modification. If liberalisation is to follow, it is important that legal infrastructure is put in place to regulate use of this technology. This issue deserves far more time than the limited provision available in the federal spending bill’s appropriations process. The debate around genetics is set to intensify in the years ahead. Let us hope more time is given to this in the US and across the world sooner rather than later to ensure intelligent and responsible law and policy making for future generations.

You can read more about genetic policy in my blog dated 2 June 2019 entitled “Power, Wealth, Baby-Making and Genetic Policy Responsibilities” and my blog dated 30 April 2019 entitled “Should I undergo genetic testing before having a family?”.

If you would like to discuss your situation or you require specialist advice about fertility and family law and policy please contact me by email louisa@louisaghevaertassociates.co.uk or by telephone +44 (0)20 7965 8399.

 

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