top of page
Search

The Wonders and Risks of Ancestral DNA Testing: Privacy Concerns, Health Data, and the 23andMe Controversy

Writer's picture: Heidi GrossHeidi Gross

Over the past decade, genetic genealogy has surged in popularity, offering people the opportunity to connect with their heritage in previously unimaginable ways. Companies like 23andMe, AncestryDNA, MyHeritage, and others have marketed their at-home DNA tests as gateways to discovering one’s roots, connecting with distant relatives, and even identifying potential health risks. The allure of these tests is undeniable, but with it comes a set of ethical, legal, and privacy challenges that consumers must carefully navigate.


Recently, genetic testing company 23andMe made headlines with the mass resignation of its Board of Directors, raising concerns about the company’s leadership and direction at a critical juncture for the genetic genealogy industry. In this post, we’ll explore some of the broader issues associated with genetic genealogy testing, with a closer look at the controversies surrounding 23andMe.


The Appeal of Genetic Genealogy

For those interested in tracing their ancestry, genetic genealogy can provide valuable insights. DNA testing can confirm family connections, help people break through genealogical "brick walls," and even reveal previously unknown relatives. It can also provide information about ancient origins, offering a glimpse into where one’s ancestors lived thousands of years ago.


Yet the appeal doesn’t stop there. Some companies offer health-related insights that go beyond genealogy, analyzing genetic markers to provide information about potential risks for conditions like cancer, Alzheimer’s, and heart disease. This combination of genealogy and health data has driven the success of companies like 23andMe, positioning them at the forefront of both the consumer genealogy and personalized health sectors.


Privacy Concerns: Who Owns Your DNA?

One of the primary concerns with genetic genealogy testing is privacy. When consumers send their DNA to testing companies, they’re not just sharing their genetic data—they’re e 23andMe, partner with pharmaceutical companies to use customer DNA data for research, a practice that has raised eyebrows. While these partnerships are often frpotentially opening a door to vast amounts of personal information. In most cases, the company stores DNA test results and is used for research purposes, with the customer’s consent.


However, questions remain about who ultimately controls this data. Some companies, like 23andMe, partner with pharmaceutical companies to use customer DNA data for research, a practice that has raised eyebrows. While these partnerships are often framed as a means of advancing medical research, the potential for misuse is real. Critics argue that consumers may not fully understand the implications of agreeing to such partnerships, especially in terms of how their genetic data could be used in the future.

Further complicating the matter is the possibility of data breaches. With sensitive genetic data stored in company databases, the risk of unauthorized access or hacking is a serious concern. A data breach involving genetic information could have far-reaching consequences, not just for individuals but also for their relatives since DNA is inherently shared among family members.


Legal Implications: Law Enforcement and Genetic Databases

Another pressing issue is the use of genetic genealogy in law enforcement. In recent years, law enforcement agencies have turned to genealogy databases to solve cold cases, leading to high-profile arrests, including the infamous Golden State Killer case. While the ability to solve crimes using genetic genealogy has been hailed as a breakthrough, it has also sparked debates about privacy and consent.


Many consumers may not realize that by submitting their DNA to companies like 23andMe or uploading their genetic information to public databases like GEDmatch, they could inadvertently contribute to a law enforcement investigation. While some see this as a positive development, helping to bring justice to victims and families, others are uncomfortable with the idea of their genetic information being used in ways they did not anticipate.


There is also the issue of familial searching, where law enforcement uses DNA to identify relatives of a suspect. This practice raises questions about whether it’s fair to implicate innocent family members in a criminal investigation simply because they share DNA with a suspect.


The 23andMe Board Resignation: What Does It Mean?

Adding to these concerns are recent developments with 23andMe. In the summer of 2024, all but one member of the company’s Board of Directors resigned, leaving CEO Anne Wojcicki as the only remaining director. This mass resignation has led to speculation about the company’s future and raised questions about the stability of its leadership.

According to reports, the resignations followed disagreements about the company’s direction, particularly in light of increasing scrutiny over privacy and data-sharing practices. Some sources suggest that board members were concerned about the company’s partnerships with pharmaceutical companies, as well as its handling of sensitive genetic data. Others have pointed to financial difficulties, noting that 23andMe’s stock has struggled since the company went public in 2021.


For consumers, this leadership shakeup raises concerns about the future of their genetic data. With so many high-profile departures, there are questions about whether the company can maintain its commitments to privacy, security, and transparency. It also underscores the importance of understanding what happens to your genetic data once it’s in the hands of a private company.


Health Data and Ethical Concerns

While many consumers turn to companies like 23andMe for their ancestry services, the company’s health-related offerings have also been a major draw. 23andMe was the first company to receive FDA approval to market a direct-to-consumer genetic test that provides health risk reports, giving consumers insights into their predisposition for certain diseases.


However, this also raises ethical questions about the interpretation of health data. Genetic information can be complex and difficult to understand, and consumers may not always grasp the limitations of these tests. A genetic predisposition for a disease doesn’t guarantee that a person will develop it, but some consumers may interpret their results as a definitive diagnosis, leading to unnecessary anxiety or even poor decision-making.

Additionally, not all healthcare providers are equipped to handle the influx of patients who come armed with genetic information from a consumer test. Without proper genetic counseling, consumers may misunderstand or misinterpret their results, potentially leading to inappropriate medical treatments or lifestyle changes.

Moving Forward: Navigating the World of Genetic Genealogy


So, what can consumers do to protect themselves and make informed decisions about genetic genealogy testing?


  1. Read the Fine Print: Before purchasing a DNA test, carefully read the company’s privacy policy and terms of service. Understand how your data will be used, whether it will be shared with third parties, and whether you can opt out of certain data-sharing practices.

  2. Consider the Long-Term Implications: Genetic data is not like other types of personal information—it’s immutable and shared with your relatives. Think carefully about the potential long-term implications of submitting your DNA to a private company, especially in terms of privacy and law enforcement access.

  3. Be Cautious with Public Databases: If you choose to upload your genetic information to public genealogy databases, be aware that law enforcement may be able to access your data for criminal investigations. Consider whether you’re comfortable with this possibility.

  4. Seek Professional Advice: If you’re using genetic genealogy for health purposes, consider consulting a genetic counselor or healthcare professional who can help you interpret your results accurately and responsibly.

  5. Stay Informed: The field of genetic genealogy is rapidly evolving, with new developments and challenges emerging regularly. Stay informed about changes to privacy policies, legal issues, and company leadership, especially for companies like 23andMe that have been subject to scrutiny.


Conclusion: The Promise and Pitfalls of Genetic Genealogy

Genetic genealogy testing has the potential to offer life-changing insights into our ancestry, health, and family connections. However, as the recent events with 23andMe demonstrate, it’s a field fraught with challenges and uncertainties. From privacy and security concerns to the ethical dilemmas posed by health data and law enforcement, consumers must approach genetic testing cautiously and clearly understand the potential risks.


At Forge Research Associates, we believe in empowering individuals to explore their family histories responsibly and thoughtfully. By staying informed and asking the right questions, you can make the most of genetic genealogy while safeguarding your privacy and protecting your personal data.


Stay tuned to our blog and social media channels for more updates on the latest trends, news, and developments in the world of genealogy.

4 views0 comments

Comments


bottom of page