Genomics has been the most transformative biotechnology of the 21st century to date. It is one that has caused significant debate amongst medical professionals and regulators since direct-to-consumer (DTC) genetic testing entered the market in the early 2000s, allowing consumers to access limited genetic information without the involvement of a physician.
As DNA sequencing costs have plummeted, the number of DTC genetic tests available through companies like 23andMe and Ancestry.com have risen rapidly. At present roughly 30 million customers have embraced DTC. It has been predicted that by 2021, over 100 million people will have utilized such analyses. In 2018, it was estimated that there were 75,000 genetic tests on the market with ten being added each day.
Affluent families are active planners and assessors of risk. With direct-to-consumer DNA testing becoming so prolific, it seems logical to examine whether these families can use genomics to their advantage when it comes to embracing human capital issues and enhancing the health and well-being of various family members.
Can these at-home DNA tests assist in determining the possibility of illness and taking steps to mitigate this risk? Should the information they provide be factored into succession decisions? Are they the missing piece of the puzzle when it comes to achieving longevity?
To answer these questions first requires a basic understanding of the current state of direct-to-consumer genetic testing in comparison to medical versions, the information these provide and what inferences can be drawn from these types of tests.
Understanding genetic testing
The human genome is made up of over 6 billion elements grouped into thousands of genes that carry hereditary information about a person’s traits, including things like hair and eye color. This information is based on the way specific molecules that make up genes are arranged.
Genetic testing examines these arrangements or variations. The results are used to determine the risk of disease development, screen for and diagnose rare diseases and, in some cases, may be used to determine medical treatment when predicting things like drug responses. In a clinical setting, the results of these tests are used to inform medical treatment decisions.
Ronnie S. Stangler, M.D., physician, psychiatrist and founder of Genome Advisory, helps families of wealth navigate the field of genomics from practical functional applications, its risks and ethics, to the dreamspace of aging-reversal.
Dr. Stangler comments, “I often share with my clients that DTC genetic testing products typically capture less than 0.01% of their DNA. For example, 23andMe only tests for three of over 1,000 BRCA mutations, known to contribute to the development of breast and ovarian cancer. Thus, 90% of participants who carry a BRCA mutation would be grossly mislead by today’s 23andMe test.”
Direct-to-consumer genetic tests offer a variety of limited health information. This includes their calculations of risk of developing certain diseases, carrier status for certain conditions (these indicate whether a person carries a gene for a recessive disease that may be passed on to their offspring), and predictions on how a person will respond to certain drugs. Some recreational tests offer non-disease related information such as ancestry, eye-color, propensity to blush based on earlobe size and a host of other “infotainment” data.
Unlike clinical genetic tests, DTC tests, even those manufactured by 23andMe, which have FDA approval to market, are not intended for diagnostic purposes as they provide risk information based on a limited set of conditions. These tests not only have varying levels of evidence to support their claims, but different companies also test different variants. This can lead to contradictory results for the same condition.
Clinical studies have shown that 40% of the raw data direct-to-consumer tests use can yield false positives, which may cause unnecessary stress and anxiety in users. These tests can also produce false negatives, as Dr. Stangler noted earlier, which may put users’ minds at ease even though they are unknowingly still at risk.
Of course, genes are not the sole determinant of a person’s ultimate destiny. Lifestyle, experience and environment are powerful factors as well.
Privacy and ethical considerations
Besides the apparent shortcomings of current DTC genetic tests, another issue for wealthy families to consider is privacy.
Beyond the medical risks associated with direct-to-consumer genetic testing, I have grave concerns about privacy and security. In its current state, DTC is a privacy and security minefield.
Direct-to-consumer DNA companies not only share their data with government and law enforcement, but some may even sell it, compromising confidentiality.
Private health information splashed across the tabloids is not only a personal nightmare, but it could also have far-reaching organizational ramifications for those in family offices. Does the extended family deserve to know about the specific health risks of other family members? What if board members suddenly discover the company’s founder or their future successor has a chance of developing a mental illness or debilitating disease? Will decisions be made based on this information, or will it influence decisions?
Thus, affluent families need to consider how the information made available through these tests could potentially impact other family members and influence their roles within the company as well as succession decisions.
In other instances, users may have the option to share their DNA data openly, allowing them to locate and connect with distant relatives. In ultra-wealthy families, younger members may inadvertently become targets of unscrupulous individuals and be exploited via these avenues.
Still Dr. Stangler believes there is tremendous value in understanding our genes. She explains, “As a source of raw genetic information, whole genome sequencing, which analyses the entirety of our genetic makeup, has profound advantages over DTC products. It is a highly regulated medical service with legal standards that ensure accuracy, safety and far better privacy. This is critical for families of wealth.”
How clinical genetic tests can be used to a family’s advantage
From the above discussion, it is evident that clinical genetic testing is far superior to direct-to-consumer versions at present.
According to Dr. Stangler, “Whole genome sequencing is just the beginning of the genetics journey. We use the DNA science of genomics to help individuals and global families with strategic decisions regarding health, risk and legacy. Preeminent families have already embraced planning.”
With this information in mind, environmental and lifestyle factors that could contribute to the development of certain diseases can be discussed and appropriate steps, if necessary, can be taken to minimize these risks and thereby increase the odds of longevity. This can be done for each member of the family, young and old.
The relevance of this form of risk mitigation to those in family businesses and family offices goes without saying. As much as economic and financial risks can be anticipated and planned for, today the same may be said for genetic ones.
The social, behavioural, interpersonal and ethical dilemmas that arise from knowledge of one’s genes are best resolved with the help of experts who are familiar not only with the complex science of genomics, but with the multitude of unique and challenging issues and non-financial risks faced by affluent families and the systems that support them. Families of wealth and their trusted advisors require a working knowledge of genomics in order to shape their most powerful legacy and future.
This post originally appeared on Francois Botha.