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Why we need root and branch fertility law reform

25 November 2019
By Louisa Ghevaert
Founder of Louisa Ghevaert Associates
Appeared in BioNews 1025

We are currently experiencing powerful digital, artificial intelligence, genomic science, epigenetics and human reproductive revolutions. These will increasingly blur the lines between the physical, digital and biological spheres. 

However, as these technological advances create immense responsibilities, new national and international laws, policies and safeguards will become increasingly necessary.

As more people embrace the transformational impact of these technological revolutions and calculate the economic benefits, I predict that we will see new trends resulting in fewer natural conceptions, more genetically planned parenthood and increased demand for fertility treatment. This is good news for the fertility sector.

DNA (genetic) sequencing now costs a few hundred pounds per genome, making its integration into the mainstream possible. Interpretation costs are additional, but seem likely to fall. It makes increasing economic sense to invest in genomic sequencing and possible remedies at the outset of fertility patient treatment. 

Whole genome sequencing can currently help identify upwards of 4000–6000 diseases and this number is likely to grow. It is far cheaper than the cost of treating a sick child or adult and lost productivity in the workplace. It is likely to decrease the costs of institutionalised care and result in healthier people living better quality lives. This in turn is likely to increase GDP and lead to greater innovation and development of society as a whole.

Genome editing technologies are becoming more accurate, affordable and accessible to researchers, and could in future help switch genes on and off, target and study DNA sequences. 

As genomic science and medicine becomes part of mainstream healthcare provision, I predict we will see a shift in perception towards genetically-planned parenthood to have a healthy child. This technology will help alleviate a biological lottery at birth, avoid condemning children and adults to preventable disease, pain and suffering and has the potential to improve opportunities in life. It could also help address fundamental societal issues of declining fertility levels, later-life conceptions and ageing populations.

At ground level, I expect to see changes to delivery of fertility treatment and patient care. The typical fertility patient treatment model is likely to evolve, incorporating three additional genomic steps at the outset: genomic sequencing, genetic counselling and genetic medicine (including genetic screening and genome editing). 

Genomic technology, therefore, has great potential in preventing serious and deadly hereditary diseases and over time we will inevitably see greater pressure to push the boundaries of human genetic enhancements.

In the UK, the implantation of a genetically-altered embryo into a woman is currently prohibited under the Human Fertilisation and Embryology Act 1990, (as amended), excepting under certain conditions to prevent the transmission of serious mitochondrial disease. 

Taking account of these rapidly evolving sectors will require centralised state law and integrated policies. We would benefit from a dedicated Ministry for Fertility and Genomics, with a Minister providing a unified voice, agenda and future direction for the fertility sector as a whole. This would help develop a robust genomic and fertility policy and political strategy encompassing pre-conception through to birth and future genetic legacy. 

Added to this, we should ensure the integration of specialist legal services to help protect fertility patients (and future born children) undertaking complex treatment and provide a truly multi-disciplinary medico-legal process.

We will also need informed and effective oversight of genomic science and medicine to protect standards and prevent abuse of this technology. Close oversight, accountability and transparency will be required, and regulation must strike a careful balance between respect for the individual and the interests of the state. 

Law and policymakers must adopt caution in deploying these powerful technologies, and it will be important to see how countries across the globe meet the challenge. It will be vital to seek international consensus and build new international legal infrastructures to mitigate the risks and prevent rampant genomic and fertility tourism.

It will require engagement and commitment to help law and policymakers build effective legal and regulatory frameworks that will safely and successfully harness the enormous transformational power of genomic science and medicine in the fertility sector over the next 10–20 years and beyond. 

Success is there for the taking, but the stakes are very high and we overlook root and branch law and policy reform at our peril.

Why we need fertility law reform: the paradigm shift
Louisa Ghevaert Associates |  25 November 2019
19 October 2020 - by Louisa Ghevaert 
The UK Government recently published a new genomic healthcare strategy. In doing so, it envisages creating the most advanced genomic healthcare system in the world and ensuring the UK remains a global leader in genetics and genomics...
4 November 2019 - by Emma Laycock 
The US National Council on Disability (NCD) has published a new report calling for greater oversight of genetic testing, particularly prenatal testing...
16 September 2019 - by Dr Maria Botcharova 
Seventeen former employees of a genetic testing company, Orig3n, have accused it of not meeting scientific standards and returning inaccurate results...
19 August 2019 - by Rachel Siden 
California has passed theĀ first-ever bill regulating genome editing technology that targets do-it-yourself CRISPR kits...
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