Why we need genomic and fertility law reform part V

22 May 2021

Covid-19 is an effective mass disrupter with serious global morbidity and mortality implications. It spreads and mutates rapidly causing widespread disease, damage and loss. It is responsible for 166 million recorded cases worldwide and 3.44 million deaths as at 22 May 2021. It brings with it global lockdowns, health emergencies, economic loss, civil vulnerability, unrest and disruption of personal and family life.

Here in the UK, we have recently battled and come through a second wave of Covid-19 following a long, hard national lockdown over the winter and spring of 2021. We have endured prolonged restrictions, illness, loss, uncertainty and tragically around 128,000 have so far lost their lives in the UK during this pandemic. It has hit us hard as a nation, particularly the elderly and vulnerable. Our children and young people have also had to make great sacrifices in personal freedoms, mental health, education and future prospects for the benefit of our society as a whole. This carries a legacy that is still unfolding and there are many questions that need answers and lessons that must be learned.

It is notable that there was a lack of preparedness for a pandemic virus like SARS-CoV-2.  UK law and policy has had to adopt a wartime footing that many of us have never witnessed before because we are quite simply at war with this virus. We have witnessed a fast learning curve and we are starting to see a growing realisation amongst law and policy makers that genomics is an influencer of state politics and is not just something that informs our understanding about the origins and  genetic make-up of viruses like Covid-19, development of successful vaccines and gene therapy treatments.

Whilst we are starting to defeat Covid-19 in the UK with the successful roll-out of our national vaccination campaign, there is currently concern about increased transmissibility of the rapidly spreading Indian variant and a new triple mutant variant of the disease in Yorkshire and the Humber which is ‘under investigation’.  Furthermore, we will continue to remain at risk of further pandemic disruption, destruction and death by new variants and viruses that evade current vaccines and treatments and which threaten our national security, health, wealth and way of life. The risk of future global pandemics and how we respond to these will therefore need to be informed and shaped by genomic, scientific, technological and healthcare advances, as well as enlightened centralised strategies and transparent and effective international co-operation.

Covid-19 is, however, just part of a complex picture that is rapidly evolving around us. With the continual development of powerful transformative gene-editing tools and scientific and digital technology we increasingly have the capacity to digitally programme, enhance and re-structure our genome and life itself. This brings increasing prospects of an era of precision and preventative medicine that will overcome many genetic diseases and cancers and hope for longer and healthier lives. However, it means we also have the scientific capability to create virulent ‘gain-of-function’ viruses (that are more transmissible and effective in causing disease) and new unknown recombinant viruses (combining elements of different viruses) that have the potential to cause mass pandemic disruption and destruction.

There is therefore an urgent need to implement intelligent genomic and fertility law reform and develop new policies and practices to adapt to a range of powerful and inter-connected factors: fallout from the Covid-19 global pandemic, changing geopolitics, evolving biopolitics, declining fertility levels and rapid intersection of genomics, digital, AI and assisted reproductive technology and fertility treatment.

This raises new issues, challenges and opportunities for public health, healthcare, assisted conception, human genetic enhancement, scientific, medical, digital and AI research and innovation, national security, economic stability and human rights that need to be carefully addressed with new governance frameworks. We fail to appreciate at our peril that this rapidly evolving technology is multi-faceted and it has the capacity to influence and change the international geopolitical and biopolitical balance carrying immense responsibilities.

Governance: What can be done?

It is a significant sign of the changing times we are living through that US President Joe Biden selected geneticist Professor Eric Lander as his presidential scientific adviser. On Thursday 21 May 2021, the Senate Commerce Committee approved President Biden’s nomination of Professor Lander to be chief science adviser, one of the last unfilled Cabinet posts in the Biden administration. The committee’s approval clears the nomination for an eventual Senate confirmation vote. It is the first time that a biologist will sit in Cabinet as the director of the Office of Science and Technology Policy (OSTP). In doing so, Biden seeks to ensure that his administration is led by science to tackle the Covid-19 pandemic and address climate change. Since genomics and science increasingly influence all aspects of policy and governance, it comes as no surprise that Professor Lander has been nominated to join the US Cabinet because he is an expert in genomics.  Professor Lander co-led the public Human Genome Project and the completion of its first draft in 2001 termed  the “book of life.” In 2003, he also founded and now leads the Broad Institute, a genome-sequencing powerhouse.

China has also made recent changes to its governance to take account of rapidly evolving genomic, scientific and technological developments and pandemic threat. On 15 April 2021, it inaugurated a new Biosecurity Law to accompany the construction of new genomic laboratories. On 13 May 2021, it announced an overhaul of its public health bureaucracy by launching a new National Administration of Disease Prevention and Control (NADPC) that reports directly to China’s State Council. It takes in the existing Chinese Center for Disease Control and Prevention (China CDC) and its aim is to overcome existing bureaucracy that restricted swift and effective information sharing between local authorities and top national officials in the initial stages of the Covid-19 outbreak.

With this step-change in mind, here in the UK we would benefit from a top level multi-disciplinary strategy group that operates on a continuous basis in the UK and not just during emergencies. It would include intelligent, forward-looking and strategic thinkers who sit outside the elected political elite. They would shift paradigms and deliver informative assessments to law and policy-makers to help shape the future more quickly and effectively. This top level strategy group’s remit would extend beyond that of the government’s Scientific Advisory Group for Emergencies (SAGE) and The New and Emerging Respiratory Virus Threats Advisory Group (NERVTAG). It would be tasked with driving innovation, identifying and mitigating risk with joined up thinking between the genomic, healthcare, fertility, technology, science, education, economic and other sectors in the UK. It would help us respond effectively to the rapidly evolving inter-connected digital, artificial intelligence, genomic, epigenetic and reproductive technological advances. It would also help address ‘silo mentality’ and short-term decisions and responses to the many challenges we face. In doing so,  it would help create new legal frameworks and infrastructure to keep pace with the massive changes that are happening around us.

We would also benefit in the UK from a new Ministry for Genomics and Fertility, with a dedicated Minister providing unified future direction for the fertility sector. This would help develop new integrated national genomic and fertility policy and political strategy. This would help combat our growing fertility problem in the UK. It would also bring greater cohesion, promote and prioritise the fertility space which is increasingly influenced by the application of genomic technology including the ability to prevent genetic disease and create enhanced human characteristics.  Additionally, it would help create an all-inclusive policy and strategy that encompasses fertility issues from pre-conception through to pregnancy and birth, as well as individual fertility and genetic legacy in the UK.

The way ahead

Moving forward, it is critical that we seek to understand these new and complex issues and the rapidly changing environment around us. We must ask big and uncomfortable questions and seek indisputable answers to many challenging issues. Is Covid-19 the result of a zoonotic spillover event or laboratory release (accidental or deliberate) of a virulent gain-of-function virus? How will future pandemics come about and manifest themselves? Will they be a natural occurrence or genetically engineered and released by man? What will happen if or when new viruses focus on certain ethnic groups, nationalities, genetic profiles or physical characteristics? What if new and unknown viruses create a legacy of life-limiting health problems? What will happen to our national economies and individual wealth if newly evolving viruses and pandemic events happen more frequently? To what extent will they destabilise and disrupt our society and undermine national security? Thus far, there has been a concerted focus on combatting Covid-19 and developing treatments and vaccines.  However, as we continue to navigate a pathway through this pandemic we need to understand its root cause and take active steps to minimise the possibility of similar future events. We must do much more to investigate and question scientific and political events and explanations.

From a nation state perspective, we require greater oversight of scientific activity, tighter control of borders, closer oversight and security of genomic data, research and development, improved genomic defence capability, self-sufficiency in genomic testing, vaccines, equipment, manpower, skills and priority funding to achieve this. We must not rest on our laurels and take a short-term approach. Whilst we have learned some lessons from Covid-19, we do not yet have a full understanding of its origins and as a consequence we are not yet fully equipped for the next viral pandemic and the rapidly evolving genomic landscape which is increasingly affecting our established way of life.

Need a fertility lawyer? For further information and assistance contact Louisa Ghevaert by email or by telephone 44 (0)20 7965 8399.

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