What Does Madonna Know About Her Genes That You Don’t? Genomics and Its Impact on Families of Wealth

When Madonna performs, she reportedly engages a sterilization team to sweep, mop and wipe every surface of her dressing room, so that no trace of her DNA is left for surreptitious analysis, cloning or experimentation. Hacking portends the specter of a black market which will trade in valuable genetic information about prominent individuals and families. Is Madonna paranoid? Or smart? You decide...

2020: THE AGE OF THE GENOME
The DNA science of genomics is now a critical part of strategic planning regarding health, risk and legacy for wealthy individuals, global families and their advisors.

Every living organism is made up of cells. Each cell contains a set of genes encoded with DNA which provides comprehensive instructions that constitute the master blueprint for our lives. In conjunction with environment and lifestyle, our genes are responsible for determining fundamentals of who we are: our appearance; traits; how we survive and prosper; how we age; how we decline.

Genes are our universal inheritance and legacy. They have been so since the onset of humankind. Historically they have been an invisible presence. Until now.

We have entered the Age of the Genome, an extraordinary era of transformative biotechnology. Today, we can not only fully see our genes - an essential building block of our humanity - but we can read them like the words of a book. And now we can edit, enhance and create genes, as well.

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

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

The first human genome was sequenced in 2003. This fifteen year project cost over $3B. Today, we can analyze the human genome for less than $1,000 within weeks. Personal motivations for WGS currently include: accessing health information, often providing actionable insights; understanding disease risk; knowing what one will pass on to one’s children; 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 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 direct-to-consumer genetic analyses is genotyping, which provides a limited picture of less than one percent of one’s genes, preselected by individual companies on the basis of known associations with specific traits and diseases.

Alternatively, whole genome sequencing provides a literal snapshot of the entirety of one’s genes. 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. And genes permeate all aspects of family.

Traditionally the wealthy have focused on financial well-being, preservation and growth of capital. New knowledge of family genes will progressively influence all aspects of health, physical and emotional well-being; reproduction and family relationships; as well as the most traditional domains of family advising and operation of family enterprise. And the wealthy are already amongst the earliest adopters of cutting-edge DNA science.

Genomic information is already being used to inform best decisions around health, risk and legacy. Thus, knowledge of genomics and its impact on wealthy families is now part of an essential toolkit for the family advisory. Preeminent families have already embraced planning of genomics strategy.

VIEWING THE FAMILY OFFICE THROUGH THE LENS OF GENOMICS
Genomics has moved from an abstract quantitative entry in investment portfolios to a vital living tool for creating healthier, longer, disease-free lives.

How can we consider succession without considering genes?
Heredity is succession. It is the succession of genes. How will succession planning be affected by knowledge of health futures of family members?

How can we consider trusts without considering genes?
As we learn more about health risks, there are profound financial and social implications. If a family member has significant likelihood of imminent disease, appropriate planning is critical. What family resources should be allocated to access new mitigating interventions? Early gene- editing therapies are extremely costly, and no matter how wealthy a family, resources are finite.

How can we consider estate planning without considering genes?
Radical longevity and the genetic means to achieve it will alter financial requirements. New financial instruments must be developed to accommodate increased lifespan.

How can we consider fiduciary responsibility without considering genes?
Trustees and advisors will be challenged by new medical information that is difficult to interpret. Deciding how to utilize this information creates unprecedented ethical dilemmas. Families must align on an ethical framework to guide such decisions.

How can we consider governance without considering genes?
Governance must reflect a common family vision with the understanding that genetics is not a solo sport. Every biologically related family member is literally tied to every other by the life thread of shared DNA.

And perhaps, most of all, as families plan for the future...

How can we consider next-gen without considering genes?
Next-gen have access to rapidly evolving radical reproductive technologies. They must also navigate new relationships with parents who may be physically and mentally vital well into their nineties and beyond. Parents may wish to continue their tenure within the family enterprise. This will create new frictions. Parents may also choose to create genetically enhanced new children, perhaps younger by an entire generation than their older siblings.

DEVELOPING A GENOMICS STRATEGY FOR YOUR FAMILY AND FAMILY OFFICE
Family offices are as unique as the families they serve. Genomics strategy must be developed to support families as they navigate the complex field of genomics and engage with the science directly.

Human and behavioral perspectives cannot be ignored. Genomic information will have an impact on family dynamics; family identity; and the psyches of individuals who learn about new health risks, vulnerabilities and opportunities for enhancement.

Wealthy families are already formalizing family genomics chartersto guide ethical decision making, now and through the future.

Genes are rarely absolute destiny. Our environment and life experiences profoundly alter the expression of genes. Will knowledge of genes spur us to better life choices? Change is challenging. Family members require high-touch support to alter behavior in positive ways.

There is dire need, as well, for trustees and advisors to understand the complex nature of systems of wealth and to integrate rapidly evolving biological considerations through processes when appropriate and beneficial to do so. Trustees and advisors will help determine how decisions are made; where sensitive data is saved; who has the right to access such data and when; and how resources will be allocated.

Families of wealth have the financial means to direct education and funding of medical initiatives of unique concern, as well as the potential to fund more generative, legacy and aspirational projects.

For example, when Sergei Brin, Co-Founder of Google, learned about his genetic vulnerability to Parkinson’s Disease, he radically altered his philanthropic strategy to support basic science research in the field. After changing the way the world searches for information on the web, he has now revolutionized how scientists approach Parkinson’s Disease.

Genomics will inevitably become an essential component of the family philanthropy portfolio in highly personal ways.

RISK MITIGATION FOR UHNW FAMILIES
Risk mitigation is a core responsibility in management of UHNW families and wealth. Direct- to-consumer genetic testing products present risks that must be contained immediately.

In December 2019, the United States Pentagon provided strong caution about the use of consumer genetic products by the military (“Pentagon Warns Military Personnel Against At-Home DNA Tests”, The New York Times, 24 December 2019).

Legal professionals have spoken out as well: “Collecting [genetic] data could have unintended consequences. It can be lost to hackers, spies, others who might steal it... or exposed in government investigations through subpoenas... So people planning to plaster their deepest internal and family secrets into private company databases should consider the risks that the private DNA mills don’t want you to think about.” (“The Shell Game Played with Your DNA, or 23 and Screwing Me”, The National Law Review, 23 January 2020).

These groups represent a mere handful of increasingly concerned entities who detail gross compromise of privacy, security and accuracy. And Madonna saw it coming!

As a predominantly unregulated industry, DTC genetic testing entities often provide misleading information based on pseudoscience, making undeliverable promises. At times they offer false and dangerous reassurance about lack of medical vulnerability. For example, 23andMe only tests for three variants of BRCA genes responsible for breast and ovarian cancer, although more than 1,000 BRCA variants are known to increase cancer risk. 90% of participants who carry a BRCA mutation would be missed by today’s 23andMe test.

Families of wealth, who require safety, security and privacy at all costs, must reject these at-home testing products entirely. The infotainment they provide is not an acceptable trade-off for the risks they impose, especially compromised safety.

By contrast, the whole genome sequencing industry is strictly regulated, governed by law and operates with the highest evidence-based technical medical standards and protection requirements for those whom they serve. Whole genome sequencing presents a far superior alternative for families of wealth.

Sequencing itself is but the first step of a life-long genomics journey. Once you have been sequenced, interpretation of your raw genomic data is a dynamic process, constantly evolving. New and increasingly complex insights will become available at exponential speed. Professional guidance is an absolute requirement to optimize translation and enhance health.

Imagine the following scenario:
A highly educated, vital, healthy 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 and social impact of such an event on his family, the family office and the larger family organization. And consider the economic risk of not anticipating such an event, especially as this silent medical condition might have been understood using currently available DNA medical science through whole genome sequencing (“Predicting Sudden Cardiac Death”, The Harvard Gazette, 16 November 2019).

THE FUTURE
Families of wealth, family offices and family enterprise will ultimately be enriched by the gifts of genomics. This disruptive, deeply intimate human science bodes an extraordinary future with elimination of malignant disease, enhanced well- being and healthy longevity.

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 and a formal blueprint for its ethical application allows them to shape their most powerful legacy and future.

This article was written for Horizons: Family Office & Investor Magazine, published by Opalesque, March 20, 2020.

The science of genomics is progressing at an exponential rate

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