openPR Logo
Press release

Future of Privacy Forum and Leading Genetic Testing Companies Announce Best Practices to Protect Privacy of Consumer Genetic Data

08-01-2018 03:45 PM CET | Science & Education

Press release from: Future of Privacy Forum

23andMe, Ancestry, Helix, and other leading consumer genetic and personal genomic testing companies back strong protections, including express consent, transparency reports, and strong security requirements

Washington, DC, August 01, 2018 -- Today, Future of Privacy Forum, along with leading consumer genetic and personal genomic testing companies 23andMe, Ancestry, Helix, MyHeritage, and Habit, released Privacy Best Practices for Consumer Genetic Testing Services. The Best Practices provide a policy framework for the collection, protection, sharing, and use of Genetic Data generated by consumer genetic testing services. These services are commonly offered to consumers for testing and interpretation related to ancestry, health, nutrition, wellness, genetic relatedness, lifestyle, and other purposes.

"Supporting strong and transparent industry-wide guidelines that provide people with confidence that companies in this growing field will protect their privacy is critical to the continued success of this nascent business sector," said Jules Polonetsky, CEO, FPF. "That is why we have been working with the industry leaders for the past year to develop privacy and data principles that we and our peers in the personal genomics industry can embrace. We believe that these best practices are essential to engendering trust so that all people can safely access their genetic information."

Consumer genetic tests, tests that are marketed to consumers by private companies, have empowered consumers to learn more about their biology and take a proactive role in their health, wellness, ancestry, and lifestyle. When consumers expressly grant permission and provide an informed consent, they can choose to share their genetic data with responsible researchers to help support a better understanding of the role of genetic variation in our ancestry, health, well-being, and much more.

"Protecting our customers' privacy is Ancestry's highest priority," said Eric Heath, Chief Privacy Officer, Ancestry. "As a leader in the direct to consumer DNA testing market, Ancestry recognizes the important role that our industry can play in protecting the privacy and data of all customers. We understand the sensitive nature of the information our industry handles and our responsibility as stewards. We are grateful for the Future of Privacy Forum's leadership in working to get these Best Practices drafted, vetted and aligned, and look forward to seeing these Best Practices broadly adopted across the industry."

Today, more consumer genetic testing services are available than ever before, prices for testing are becoming increasingly affordable, and the speed at which testing is completed is accelerating. As the industry continues to expand and the technology becomes more accessible, it is vital that the industry acknowledge and address the risks posed to individual privacy when Genetic Data is generated in the consumer context.

"We're seeing such a rapid progression of the industry, owing to both the advances in technology and the increasing accessibility of genomic information for personal and research use," said Elissa Levin, Head of Policy and Clinical Affairs, Helix. "We think it's essential to take a leadership position to continue to grow the industry responsibly, in ways that keep consumer safety at the forefront of action, and pave the way for better experiences and learnings that ultimately help people lead better lives."

"Everyone who participates in a genetic testing service deserves to have their information protected, no matter which service or product they use. It's imperative that all consumer genetic testing companies adhere to comprehensive privacy protections, and clearly communicate their policies to consumers in a transparent manner," said Kate Black, Global Privacy Officer, 23andMe. "With over a decade of experience as a leader in consumer genetic testing, we've built incredibly strong privacy practices. We are happy to now work with the industry and an organization like the FPF to solidify best practices, and help ensure proper protection of consumers' genetic information more broadly."

The Best Practices are also supported by other consumer genetic testing companies including African Ancestry and FamilyTreeDNA.

The Best Practices establish standards for genetic data generated in the consumer context by making recommendations for companies' privacy practices that require:

- Detailed transparency about how Genetic Data is collected, used, shared, and retained including a high-level summary of key privacy protections posted publicly and made easily accessible to consumers;
Separate express consent for transfer of Genetic Data to third parties and for incompatible secondary uses;
- Educational resources about the basics, risks, benefits, and limitations of genetic and personal genomic testing;
Access, correction, and deletion rights;
- Valid legal process for the disclosure of Genetic Data to law enforcement and transparency reporting on at least an annual basis;
- Ban on sharing Genetic Data with third parties (such as employers, insurance companies, educational institutions, and government agencies) without consent or as required by law;
- Restrictions on marketing based on Genetic Data; and
- Strong data security protections and privacy by design, among others.

"The Best Practices recognize that Genetic Data is sensitive information that warrants a high standard of privacy protection," said Carson Martinez, Policy Fellow, FPF. "Genetic Data may be used to identify predispositions and potential risk for future medical conditions; may reveal information about the individual's family members, including future children; may contain unexpected information or information of which the full impact may not be understood at the time of collection; and may have cultural significance for groups or individuals. It is therefore critical that the appropriate level of privacy protections is implemented."

In producing the Best Practices, FPF and privacy leaders at the companies incorporated input from the FTC, a wide variety of genetics experts, and privacy and consumer advocates.

To request comment from FPF or the leading consumer genetic testing companies that were involved with these Best Practices released today, please find contact information below:


Future of Privacy Forum is a nonprofit organization that serves as a catalyst for privacy leadership and scholarship, advancing principled data practices in support of emerging technologies.

Melanie E. Bates
Director of Communications
Future of Privacy Forum
1400 Eye Street NW
Suite 450
Washington, DC 20005

This release was published on openPR.

Permanent link to this press release:

Please set a link in the press area of your homepage to this press release on openPR. openPR disclaims liability for any content contained in this release.

You can edit or delete your press release Future of Privacy Forum and Leading Genetic Testing Companies Announce Best Practices to Protect Privacy of Consumer Genetic Data here

News-ID: 1156042 • Views: 623

More Releases for Genetic

Preimplantation Genetic Testing Market is Blooming Worldwide
HTF MI recently introduced Global Preimplantation Genetic Testing Market study with in-depth overview, describing about the Product / Industry Scope and elaborates market outlook and status to 2023. At present, the market is developing its presence and some of the key players from the complete study are F. Hoffmann-La Roche, Abbott Laboratories, Thermo Fisher Scientific, Natera, Illumina & Perkin Elmer etc. The market Study is segmented by key regions which
Genetic Analysis ASProduct Pipeline Analysis, 2017 Update
"The Report Genetic Analysis ASProduct Pipeline Analysis, 2017 Update provides information on pricing, market analysis, shares, forecast, and company profiles for key industry participants. -" About Genetic Analysis ASProduct Market Genetic Analysis AS (Genetic Analysis) is a molecular diagnostic company that mapping of microbiota by utilizing the GA-map technology to develop IVD tests in various diseases. The company develops gene-based routine tests for the mapping and diagnosis of
Preimplantation Genetic Diagnosis: Scope & Revenue Outlook
Rising numbers of assisted reproductive procedures such as in vitro fertilization (IVF) is Asia is the most prominent factor driving the market for preimplantation genetic diagnosis. This is, in essence, the result of factors such as the delayed age of conception among Asian women, the rising rate of infertility among the population, and the significantly expanding medical tourism industry in the region. Rising disposable incomes and increased awareness regarding the
India Genetic Testing Market Analysis
India is witnessing an accelerating shift towards the prevalence of non-communicable diseases, having secured third position in congenital malformations and genetic disorders as the commonest causes of mortality in neonates in cities. The ability to identify these non-communicable diseases at an early stage lies within the genetic screening segment. Genetic screening, however, is still in its infancy and there are many challenges that need to be overcome in order to
Genetic Testing Services Market Analysis – 2023
Genetic testing is one of the most rapidly growing segments in molecular diagnostics industry that helps in delivering customized health services and is also called as personalized medicine. The genetic testing services include genetic testing, results interpretation, information analysis, education and counseling. Growing know-how about genetic testing, technological advances in genetic sequencing, rising incidences of genetic diseases especially cancer is the major factors propelling the genetic testing services market. Currently
Preimplantation Genetic Diagnosis - Saving Offsprings From Any Genetic Disorder
The market for preimplantation genetic diagnosis (PGD) in Asia features high fragmentation when it comes to diagnostic service providers. The large number of local players has intensified the competitive rivalry in the region. However, owing to the lack of better alternatives to PGD, costs of these procedures remain high, a major limiting factor for the market, especially in cost-sensitive developing countries in the region. A recent report by TMR suggests that