Genes: On the Agenda for Cutting Edge Families

This is not an article about genomics or DNA science. This is an article about families – what they need to flourish and thrive. Over the next decade, families, entrepreneurs and family enterprises around the world will gain increasing access to the cutting-edge science of genomics to make informed decisions around health, risk and legacy. However, many of these choices will be complex and unprecedented, rife with ethical ambiguity.

Genomics will transition from an abstract quantitative entry in an investment portfolio to a vital tool for creating healthier, longer, disease-free lives. As such, genomics literacy must become part of an essential toolkit for family members, advisors and trustees to assist families in basic organisational function and legacy creation.

IMAGINE...

A highly educated, vital, socially-conscious, beloved 35-year-old family member is appointed CEO of the core global family enterprise. He dies at his desk from an unanticipated cardiac event on the second day of his tenure.

Consider the profound emotional, social and economic impact of such an event on his family, the family enterprise and the family organisation at large.

Could this tragic death have been avoided using the currently available DNA medical science of genomics? The answer might soon be yes.

GENES
Each of our cells contains a set of genes – instructions constituting the masterplan of our lives. In conjunction with our environment and lifestyle, our genes determine the fundamentals of who we are: our appearance, idiosyncratic traits, how we survive and prosper, how we become ill and how we age.

While genes do not constitute absolute destiny, they are a critical ingredient to understanding our lives. Extraordinary advances in science have not only facilitated our understanding of genetics, but they have also increased our agency. Now we can alter our genes through radical gene-editing technologies such as CRISPR.

GENETICS vs GENOMICS
Many of us first learned about genetics in high-school biology as we contemplated Mendel’s pea plant experiments of the 1860s. Genetics is the study of heredity and individual genes.

Genomics, however, is the study of an organism’s complete set of genes, called the genome, the entirety of its DNA. The genome can be analysed through a process called whole genome sequencing (WGS).

The first human genome was sequenced in 2003 – a 15-year project that cost over $3 billion. Today, we can analyse the human genome for less than $500 within weeks. Personal motivations for WGS currently include: accessing health information, often providing actionable insights; understanding disease risk, especially between generations; and receiving information about response to particular medications (pharmacogenomics).

GENOTYPING vs WHOLE GENOME SEQUENCING
While DNA and genes are now very much a part of public consciousness, propelled mostly by the widespread adoption of direct-to-consumer (DTC) genotyping products (e.g. 23andMe, Ancestry.com, etc.), few understand the specifics of what these products offer. The technology underlying DTC genetic analyses is genotyping, which provides a picture of less than 1 per cent of one’s genes, preselected by individual companies on the basis of known associations with specific traits and diseases. Alternatively, WGS provides a literal master blueprint of the entirety of a person’s genome. Some have compared the difference between genotyping and WGS to the difference between a tricycle and a race car.

GENOMICS AND WEALTH
The wealthy represent a population with the same concerns about health and genes as all others. However, factors in their environment generate unique concerns. The very terms “family enterprise”, “family office” and “family legacy” convey their requisite focus on all that is family. The essence of what ties us together in a physical sense, genes permeate all aspects of family.

Typically, the wealthy have focused on financial well-being – the preservation and growth of capital. Knowledge of the family genome will progressively influence all aspects of health, physical and emotional well-being, reproduction and family relationships, as well as the conventional domains of family advising and the operation of the family enterprise. Therefore, the wealthy are likely to be among the earliest adopters of the technology.

Succession planning, governance, risk mitigation (especially regarding privacy and safety), legacy creation and philanthropy are but a few critical functions that can no longer be contemplated without a functional understanding of genomics.

The core issues of health, risk and legacy require deeper examination.

HEALTH: Ultimately, the human capital of family enterprise is the totality of health, well-being, reproductive vitality and longevity of its family members. Understanding one’s genes can spur better life choices and planning, inform personalised medical care, radically alter reproduction options and extend a healthy lifespan.

RISK: Risk mitigation is a core responsibility in the management of family wealth. However, DTC genetic testing products can present risks.

In December 2019, the Pentagon cautioned about the use of consumer genetic products by the military. Consumer Reports also advised against gifting these popular holiday stocking-stuffers.

At times, home DNA testing offers false and dangerous reassurance. For example, 23andMe only tests for 3 variants of BRCA genes responsible for breast and ovarian cancer, although more than 1,000 BRCA variants are known to increase cancer risk. 90 per cent of participants who carry a BRCA mutation would be missed by today’s 23andMe test.

By contrast, the WGS industry is strictly regulated, governed by law and operates with the highest evidence-based technical medical standards and protection requirements for those they serve.

LEGACY: Genomics will inevitably become an essential component of family philanthropy portfolios in highly individual ways. Catalysed by new knowledge of personal genetic vulnerability, families of wealth will inevitably choose to devote resources to support basic science to treat and even eliminate disease. A well-known example is Sergei Brin’s commitment to the science of Parkinson’s Disease.

With financial resources and moral compass, the wealthy have the potential to become transformative agents of change fundamentally reshaping the world.

UNPRECEDENTED QUANDARIES
With new knowledge of genes come unprecedented ethical, social, moral and behavioural quandaries.

Let us consider the hypothetical CEO described at the outset of this article.

Had he known about 15 newly discovered genes responsible for sudden cardiac death in otherwise healthy individuals, he could have received life-saving treatment. What is his moral responsibility to share that information with his larger family, some of whom may be similarly affected? Does he have legal responsibility to share that information with his board? Despite the availability of effective treatment, might knowledge of his medical vulnerability have affected the viability of his CEO candidacy? Could genomic analyses be required in a family enterprise for succession decisions? Would genomic analyses stimulate discrimination even though genomics offers only probabilities, not certainties? How will family financial resources be allocated in the event of prolonged costly medical treatment?

These are difficult questions with no easy answers. Each family’s ethical considerations must reflect their mores, values, culture and traditions.

Families are already formalising family genomics charters to guide ethical decision-making, now and in the future.

With new knowledge and agency comes new fiduciary responsibility to protect the lives of those we serve. We must all wrestle with its challenges, especially its ethics. Arming families with a working knowledge of genomics will allow them to shape their most powerful legacy and future.

This article was written for, and published by, Tharawat Magazine on March 3, 2020.

The science of genomics is progressing at an exponential rate

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