Genomics is a branch of molecular biology concerned with the structure, function, evolution, and mapping of genomes (that is, the entire DNA sequence of an organism).
Whole genome sequencing is the process of determining the complete DNA sequence of an organism's genome at a single point in time.
Genes are rarely absolute destiny. A complex combination of factors influence whether or not we inherit genes for certain traits, and even if we do, whether these genes will fully manifest themselves. There are many steps between what we inherit at birth and whether our inheritance will result in an observable trait during our lifetime. These steps are also influenced by a variety of external factors, such as diet, environment, medication, exercise and even random chance.
The science of genomics is unique. It is the most intimate science. It goes to the essence of family and what it means to be human.
As this disruptive technology expands and permeates all aspects of life and work, family offices and family enterprise must develop capacity to integrate ethical, moral, social, psychological and deeply personal considerations in order to both mitigate risk and to ensure optimal well-being of families and their individual members. Fiduciary responsibility of trustees must evolve to incorporate these new challenges. Legacy creation and philanthropy will inevitably change as a function of personal knowledge of one’s genome. We utilize our deep knowledge of this world to assist all stakeholders in this sector.
Gene editing is the intentional alteration of the genetic code of a living organism. These technologies act like scissors, cutting the DNA at a specific spot, and then allowing genetic material to be added, removed or altered. Recent specific technologies include ZFNs, TALENs and CRISPR.
Gene editing is being intensively explored for both prevention and treatment of specific medical disorders in which abnormal gene structure and function drive disease. Futurists imagine a time when gene editing may be used to "enhance" humans, as genes could be selected on the basis of “desirability” (e.g. intelligence, athletic ability, physical appearance). The ethical implications of gene editing are profound and must be considered as carefully as the science.
DTC genetic testing provides people access to certain genetic information without necessarily involving a healthcare practitioner or health insurance company in the process. Business is booming (the global DTC genetic testing market was recently valued at $117M USD and is expected to rise to $611M USD by 2026) with a dizzying array of options (23andme, Ancestry.com, and FamilyTreeDNA as just a representative few).
DTC companies offer consumers health education, assessment of disease risk, information about ancestry, and even recreational experiences (e.g. understanding one’s wine preferences; dating services, etc.). However, given the current lack of regulation and standards for most DTCs, ongoing concerns exist about accuracy and quality of analyses; deceptive marketing promises; protection of privacy; false reassurance about health risks; unavailable support for delivery of serious health findings.
Whole genome sequencing (see definition above) entails a far more rigorous and regulated analysis of one’s entire genome. The data received from sequencing becomes a reference for life and increasingly valuable as new correlations are determined between genes and traits.
This is a very personal decision that should only be made you, informed by knowledge of the science, as well as consideration of your unique values, mores and culture. Individuals often cite the following as key reasons for sequencing: Personal curiosity; gain actionable health insights; learn about your carrier status; discover drug sensitivities; and support genetic research.
Genome Advisory was founded with deep medical and psychological expertise, aligned with passion and purpose. We translate the complex science of genomics into meaningful and actionable information for individuals and families, family offices, family enterprise and organizations. We serve as a touchstone of exceptional professional presence for your journey into this extraordinary new world of genomics.
We work with you for defined finite periods of active involvement around specific issues or projects or on a more ongoing basis to ensure continuing optimal health, knowledge and well-being. As appropriate, we connect you to our global network of the finest genetic counselors, physicians, medical scientists and specialists.
Genetics counselors are health professionals with expertise in medical genetics and counseling. They help assess individual and family risk for a variety of inherited conditions, such as genetic disorders and birth defects.
Typically, their support does not extend into more applied or specialized areas of enquiry, e.g. how genetic predisposition might affect considerations of succession planning within a family office or enterprise; how trusts and estate planning might be affected by genetics knowledge; how an organization’s future planning must reflect an awareness of the impact of genomics into all aspects of societal and systemic function.
Genomics is a disruptive technology that will radically affect all aspects of life and work. We help our clients “cut through the noise”, discern what is personally meaningful, and distinguish between evidence-based genetic medical discovery and pop and pseudo-science. We help you navigate the many ethical, legal, moral and behavioral sequelae that arise from the application of genomics technologies.
Family Offices and Family Enterprise
How will a trustee’s fiduciary responsibilities evolve in this new era of medical knowledge? How can the family office protect its youngest members from exploitation by distant “relatives” identified through direct-to-consumer genomics testing? How will succession planning and legacy be affected by genomics knowledge? How might your family’s resources be managed differently as lifespan is significantly expanded by genomic intervention?
Individuals and Families
Learning about one’s individual genome inherently raises questions about potentially similar issues for other family members. What is one’s “duty to warn” biologically related family members about abnormalities they may carry in their genome?
How can you incorporate a better understanding of rapidly developing genomics technologies into creation of a visionary stimulating learning environment for your leaders and employees? How can you develop optimal service and offerings to your current clients? How can you engage with new clients who will be attracted to a genomically informed organization?
Each individual, family, family office, family enterprise and organization is unique. Hence, each engagement must necessarily be bespoke. We typically consult with our clients in a series of independent phases (discovery, assessment, implementation, strategic forecasting), on a defined project-by-project basis, or as house counsel for ongoing comprehensive research and support.