Advisory & Consultancy

Genomics, Fertility & Family Life

Louisa Ghevaert provides expert UK and international legal and practical advisory and consultancy to effectively navigate fertility, genetics/genomics and health, pre-conception, pregnancy, birth, general and family life, reproductive and biological legacy, policy and governance.

Process includes but is not limited to:

1. Analysis and assessment: of value proposition and bespoke strategic review, practical translation.
2. Objective independent expert opinion and recommendations: to create change and initiate new direction, culture, strategies, productivity, address issues, optimize operations and improve performance.
3. Identification and response to emerging trends and horizon scanning: to enhance resilience and preparedness, identify ‘early warning’ signals, enable informed decision-making for future environments.
4. Strategic business development and innovation assistance: to create profitability, promote growth and diversification, expand and improve market share and long-term value.
5. Implementation assistance to execute strategies: to develop a strategic position, prioritize objectives, execute a strategic plan, review and refine goals.
6. Results: growth and profitability.
7. Other anticipated needs as required.

Markets: Fertility and Reproductive Healthcare, Family Formation Organizations, Biotechnology, Life Sciences, Healthcare, Precision Medicine, Med-Tech and FemTech, Pharmaceutical, Public and Global Health, National and International Security, Think Tanks, Foundations, Policymakers, International Organizations, Private Equity Groups and Investors.

Additional Features and Benefits:

• Provides specialist expertise and skillsets not available in-house.
• Addresses resource gaps to create and implement solutions.
• Undertakes open source research and analysis.
• Delivers awareness and application of rapidly evolving law, policy and governance.
• Provides training and public speaking.
• Delivers education, coaching and mentorship programmes.
• Prepares white papers, benchmarking reports, presentations, materials.

Scope: This advisory consultancy role is a cross-cut function across the genomic, fertility, healthcare, family and governance sectors including:

• Reproductive rights, women’s and men’s health issues.
• Human rights and ethics (genomic, private and family life).
• Biotechnology, genomic and reproductive issues, policy and leadership strategies.
• Global economic genomic and fertility policy.
• Genomic sequencing and genetic screening technology issues (including preventative/precision health, genetic legacy/conception and family life).
• Gene editing technology/therapy policy and governance (reproductive genome editing, hereditary human genome editing (HHGE), somatic gene editing).
• Digital, artificial intelligence, genomic, health, epigenetic technology advances, issues, strategies.
• Biosecurity, biodefense, national/international security, public and global health issues and initiatives, strategies and governance.
• Biometrics, DNA testing, governance (pre-conception, during pregnancy, post-birth).
• Biobanking: cord blood and tissue banking application and strategies.
• Pre-conception genetic carrier screening policy and strategies.
• Pre-implantation genetic testing (PGT) policy and strategies.
• Fertility and genetic preservation and maximization issues, technologies, strategies.
• Fertility treatment and assisted reproduction/conception issues, technologies, strategies.
• Genomic and genetic family formation, restructuring and protection strategies.
• Posthumous conception and genetic/biological legacy strategies.

Genomic Engagement

Louisa Ghevaert engages with law, policy and governance concerning genomics, fertility and family law issues, including:

9 April 2019 – Louisa Ghevaert attended a Public Policy Projects (PPP) meeting at The Law Society in London on the future of fertility policy in light of the genomics revolution, with a key note speech by Professor Lord Robert Winston.

1 November 2019 – Louisa Ghevaert joined a panel of expert speakers at LaingBuisson’s Fertility Forum 2019 in London and delivered a lecture on the future legal and regulatory landscape for fertility treatment in the context of the genomics revolution.

22 June 2022 – Louisa attended Progress Educational Trust’s 30th birthday party at The Royal Society of Medicine in London. The event was sponsored by Ferring Pharmaceuticals and attended by a community of leading experts and supporters from across the fertility, medical, scientific, genomic, legal and academic sectors. Speeches were delivered by Baroness Ruth Deech DBE, PET Trustee Professor Robin Lovell-Badge CBE and PET Director Sarah Norcross.

28 September – 1 October 2022 – Louisa Ghevaert attended Illumina’s Inaugural Genomics Forum 2022. This groundbreaking event in San Diego, USA, gathered together global leaders from across the genomics, healthcare, scientific, technology, data and policy sectors to advance and improve genomic healthcare, with spotlight speeches by former US President Barack Obama and Bill Gates. You can read more in Louisa’s blog “Illumina Genomics Forum 2022: A Conversation with Former US President Barack Obama” and in “Illumina Genomics Forum 2022: Spotlight Speaker Bill Gates” and “Perspectives on Illumina’s Genomics Forum 2022”.

26 October 2022, Louisa Ghevaert visits Oxford University Nuffield Department of Population Health for a “Conversation with Professor Sir Rory Collins Chief Executive of the UK Biobank”.

Since February 2023, Louisa Ghevaert has been a member of the Advisory Board for the international Expanded Carrier Screening Research Project led by Dr Cathy Herbrand at De Montfort University, Leicester together with Professor Nicky Hudson at De Montfort University, Professor Pascal Borry at the University of Leuven, Professor Bronwyn Parry at King’s College London and Professor Zosia Miedzybrodzka at the University of Aberdeen funded by the Economic & Social Research Council and entitled, “Reproduction in the age of genomic medicine: the emergence , commercialisation and implications of preconception expanded carrier screening (ECS)”.

6 – 8 March 2023, Louisa Ghevaert attends the Third International Summit on Human Genome Editing at the Francis Crick Institute, London, organised by the Royal Society, the UK Academy of Medical Sciences, the US National Academies of Sciences and Medicine and the World Academy of Sciences. The Summit facilitated a global discussion on somatic and germline genome editing, including developments in clinical trials and genome editing tools such as CRISPR/Cas9.

12 June 2023, Louisa Ghevaert attends Decoding The Future of Women Conference 2023 as part of London Tech Week.  Its mission was to positively change the FemTech sector by changing the narrative and addressing key issues and themes. What does the future hold for women? What does future fertility, longevity, scientific discovery and sustainability look like? It asked contributors (including investors, corporate innovators and cutting-edge start-ups) to bring their most visionary self to the conference.

19 September 2023, Louisa Ghevaert attends Genomics England Research Summit 2023, which brought together the genomics community to continue to advance research and drive forward much-needed healthcare benefits and genomic medicine for patients, parents, children and families.

9 November 2023, Louisa Ghevaert attends Public Policy Projects Global Genomics Conference 2023, which explored the complex issues and challenges associated with realising the benefits of genomic sequencing both in the UK and globally, as well as the benefits of collaboration across sectors, among organisations, between countries and international diplomacy. Importantly. it also focused on the need for ensuring diversity and equity across the genomic ecosystem.

6 December 2023, Louisa Ghevaert attends Progress Educational Trust’s AGM 2023 entitled “How Much Change Do We Want? Updating Fertility Embryo And Surrogacy Law”. This event addressed the origins and history of fertility law in the UK and the challenges moving forward given ongoing rapid developments in science, medicine and assisted reproductive technology, complex issues including extending the 14-day rule for embryo research, the case for removing donor anonymity at birth, use of “add-ons”, fertility treatment funding and expanding the HFEA’s powers to regulate fertility treatment delivery at UK fertility clinics.

14 March 2024, Louisa Ghevaert attends FemTech Law Spring ’24 Connect event at 22 Bishopsgate in London. It brought together creative minds, leaders, experts and entrepreneurs from across the digital, genomic, scientific and female health and consumer spaces. Its mission is to foster vision, inspiration, change, solutions and impact across the women’s health and technology sectors.

4 September 2024, Louisa Ghevaert attends BioNews’ 25th birthday celebration at the Conway Hall in Red Lion Square, Holborn, London. This invitation-only event was well attended by a community of leading experts and supporters from across the fertility, medical, scientific and academic sectors. This special event included speeches looking at which developments in fertility, genomics and embryo research will have the greatest impact over the next twenty five years, as well as the presentation of the inaugural Marcus Pembrey BioNews Writing Prize.

23 October 2024, Louisa Ghevaert is interviewed on 8 BBC Radio Stations discussing issues and legalities associated with prenatal DNA testing and other forms of DNA testing “BBC News: DNA Testing and the Law, ‘I could have lost my child’ after flawed DNA test”. This followed news of a woman who received flawed DNA test results identifying the wrong man as her unborn baby’s father, resulting in a lengthy legal dispute over custody of her child. The woman was reportedly one of dozens of women who received unreliable DNA test results from a Canadian laboratory which advertised online.

23 October 2024, Louisa Ghevaert attends Progress Educational Trust’s event “Whole Genome Sequencing at Birth: Implementing The Generation Study”. This event provided a progress update on this landmark population cohort genome sequencing study “Newborn Genome Sequencing At Birth: The Generation Study Progress Update”.

Click here to find Louisa Ghevaert’s Law & Policy timeline.

Genomic, Fertility & Wider Law, Policy, Governance and Reform

Advances in genomics are increasingly cross-cutting a wide range of sectors including assisted reproductive technology (ART), family life, health and social care, science, digital and artificial intelligence, national security and economics, creating very significant repercussions, legal issues and policy opportunities. As a result, enlightened and integrated genomic, fertility and wider law reform is required at a national and international level to take account of this rapidly evolving landscape.

How genomic technology is used and regulated continues to require informed public debate and decision-making. It also needs new law and policy frameworks to address its transformational capability as we increasingly have the capacity to understand, change and control the human, animal, plant and microbial genome through genome sequencing, genomic science and medicine and heritable and non-heritable gene-editing technology.

The ongoing digital, artificial intelligence, genomic and epigenetic advances will also accelerate the human reproductive revolution intensely and rapidly in the absence of new law and policy frameworks. To address this, we will need national and international law reform and centralised legal regulation as we move from healthcare to health design.

Law and policy makers will also need to address a range of economic issues around this technological revolution. This will require renewed debate about price regulation, whether genomic medicine and fertility treatment should be free at the point of access, subsidised by the state or privately funded. There will also need to be debate about the costs of future investment in this rapidly evolving technology, revenue and profit generation, the commercial value of genomic knowledge, datasets, science and changes in GDP.

It is also critical for law and policy frameworks to tackle the dark side of gene-editing technology and its relationship with national security and public health now and into the future. The permanent and irreversible nature of changes to the human gene pool using human gene-editing technology (HHGE) and the wider application of gene-editing technology (encompassing human, animal, plant and microbial) has the capacity to cause harm as well as good. The science is here now and a robust framework is therefore needed now to ensure it is deployed effectively and manage the associated risks.

It will require concerted engagement and commitment to ensure law and policy makers build effective legal and regulatory frameworks that will safely and successfully harness the enormous transformational power of genomic science and medicine and gene-editing technology. Integrated multi-disciplinary success is within reach but only if we widen and shift our paradigms to achieve enlightened root and branch law and policy reform that dismantles ‘silo mentality’ and encompasses all the forces at play globally.