Last month, Ernst Young published an excellent review on the disruptive technologies of Artificial Intelligence: “How AI is Transforming Businesses Right Now”.
Ernst Young’s Global Artificial Intelligence leader, Nigel Duffy, makes the case that “Artificial Intelligence (AI) is not the future; it’s here, now.” I would posit the same for the science of genomics. What was once considered “science fiction” is quickly becoming “science fact”.
Like AI, genomics is disruptive technology with profound personal and professional implications, and uniquely so for families and systems of wealth. While we are inundated on a daily basis about dramatic promises of genomics for the future, especially as they relate to eradication of malignant disease, creation of designer babies and extreme longevity, many fail to appreciate the extent to which we have already invited genomics into our lives.
At present c. 30 million consumers have embraced direct-to-consumer (DTC) genetic testing. It has been estimated that by 2021, 100 million people will have utilized such analyses.
Motivations for testing range from curiosity about personal health, family vulnerability to medical disorders, ancestry and sometimes literally “infotainment” (everything from dating advice, personality traits to wine preferences). However, what customers receive in return is often pseudoscience, misleading and incorrect. They pay for this with potentially irreparable loss of privacy, and at times false and dangerous reassurance about lack of medical vulnerability.
I am going to briefly focus on areas of privacy and security, and will review issues of science accuracy in later articles.
It is predicted that by the end of 2020, 90% of Americans will be identifiable on the basis of genetic testing of relatives. So even if an individual now rejects DTC testing for herself, if her second or third cousins have been tested, their entire family is vulnerable to identification. Genomics is not a solo sport.
Regulation of the consumer genomics industry, especially within the United States, is dangerously lax. DTC testing entities within the U.S. are exempt from jurisdiction by the federally mandated Health Insurance Portability and Accountability Act (HIPAA), which affords protection for genetic information only when such information is generated in a medical setting. The other key federal regulation, the Genetic Information Nondiscrimination Act (GINA) offers limited protection against discrimination in the arena of employment. While GINA protects individuals’ access to medical insurance, its protection does not extend to life, long-term care or disability insurance.
Increasing screening of newborns to include tests for adult-onset disorders which cannot be treated in childhood - or for which there is no known treatment at present - such as ALS, Huntington’s disease or Alzheimer’s, potentially exposes a child to a lifetime of labeling and discrimination. Currently law enforcement has liberal access to genetic information, also exposing data of family cohorts, again, with limited regulation or oversight.
As government is sorely deficient in affording protection today, it is the responsibility of family offices to protect their own. Individuals, families and their advisors must know the landscape, recognize limits of current regulation and directly intervene.
Increasingly sophisticated analyses which create quantitative scores for disease vulnerability and presence of psychiatric and psychological traits, offer the specter of a black market which will trade in information about prominent individuals. Genetic paparazzi is a nefarious new profession.
Risk mitigation must be immediately addressed by families and systems of wealth. Empower your families, family offices, trustees and advisors to begin necessary, critical conversations. Families of wealth require agile genomics strategy which must be endorsed by every family member. Invasions of privacy for any family member potentially affects all others in the family.
Initial steps to consider include rejection of all DTC products. These companies have already broken trust by selling data to other for-profit entities, who, by definition, are also not regulated. Some DTC companies allow specimens and data to be returned or destroyed. While some have already sold data for profit, knowledge of the extent to which personal data has been exposed is critical information that may lead to other mitigation tactics. Whole genome sequencing is now a viable alternative for understanding one’s genes. The analyses provided are comprehensive, accurate, and will evolve as the science progresses. Data is far more protected, although all contracts must be reviewed with extreme care and attention to detail.
Genomics bodes an extraordinary future with elimination of malignant disease, enhanced health and well-being, and healthy longevity, but it is not without risks and challenges. While family offices and enterprise must plan comprehensively for tomorrow’s genomics, we cannot sufficiently emphasize actions that ideally would have been taken yesterday, which must be put into place today. With new knowledge comes new fiduciary responsibility to protect the lives of those we serve.