Consent for the Whole Family
When your product reveals something about people who never bought it, consent has to reach further than your customer.
- Difficulty
- Advanced
- Time to result
- ~ongoing to results
- Steps
- 6
- Confidence
- 85%
23andMe faced a structural problem: you share DNA with your family, so learning about yourself means learning about them. A customer can discover that their father is not their biological father, that they're of Jewish or African descent, that a parent was a sperm donor, or that both parents carry an Alzheimer's risk variant. Wojcicki's position is firm on ownership — it's your DNA and you have the right to access what is fundamentally about you — but pairs it with a heavy consent process, an ethics team hired before scale, and explicit guidance that customers be sensitive about how and whether they pass information on. The company deliberately rejects 'move fast and break things,' thinking through the consequences of every data release.
Origin
Privacy, transparency, and choice were priorities from 23andMe's founding. The company spent extraordinary time with ethicists and privacy experts, and the first scientist hired outside the founding team ran its entire ethical, legal, and social interaction function — a structural choice Wojcicki cites as what makes 23andMe different from other tech companies.
Core principles
- 01Some information is individually owned but collectively consequential — your DNA is yours, but it discloses your relatives.
- 02The customer has the right to their own data; the company has the duty to make the ripple effects explicit.
- 03Ethics staffing is a founding decision, not a compliance afterthought.
- 04In consequential data products, 'move fast and break things' is disqualifying.
- 05Sometimes the responsible use of information is not to communicate it at all.
How to run it
- 1
Map the disclosure ripple
Enumerate exactly who else is revealed when one customer sees their result. For 23andMe: parents, siblings, unknown relatives, and anyone whose paternity or ancestry the result implies.
- 2
Hire ethics before scale
Put ethics and privacy expertise into the founding structure. 23andMe's first non-founding scientist ran the ethical, legal, and social function — which is why the capability existed when it was needed.
Watch out Ethics hired reactively after an incident is compliance, and it arrives too late to shape the product.
- 3
Make consent name the surprises
Build a consent process that states plainly what unexpected things people may learn — non-paternity, unknown siblings, unexpected ancestry — rather than burying it in terms.
Pro tip Some customers come specifically seeking these discoveries; others are blindsided. The consent must serve both.
- 4
Hold the ownership line
Take a clear position: it's the customer's data and they have the right to what is fundamentally about them. Family consequences justify care in the process, never a veto on access.
- 5
Coach the downstream sharing
Help customers think about how to communicate what they learn to family — appropriately, directly, or sometimes not at all. Wojcicki notes customers who wait until adoptive parents pass away before testing.
- 6
Gate every release on consequences
Review each data release and information set for how people will actually use it. Wojcicki explicitly refuses 'run fast and break things' because customers make life-altering decisions on the output.
Watch out An ancestry data refresh that moves someone from 0.4% to 0.1% Japanese is trivial to you and identity-shaking to them.
In the wild
An adopted woman with a high-powered Silicon Valley job learned through 23andMe that she was part of a reindeer tribe in the Arctic Circle. She quit her job, moved there, and devoted her marketing abilities to bringing publicity to the community. Years later she wrote to Wojcicki saying she had, for the first time, found peace and home.
→ Wojcicki read the letter to the company and told them 'you guys better be right, because this woman just changed her whole life based on our data' — cementing the no-move-fast-and-break-things posture.
A customer who finds they carry two copies of the APOE4 variant has simultaneously learned that both of their parents carry an Alzheimer's risk factor — information those parents may never have wanted.
→ 23andMe's position: the customer has the right to their own data, but the company must ensure they are aware of the family consequences and communicate them appropriately, or sometimes not at all.
Written up in People magazine, an individual related to a grand klansman discovered through 23andMe that he had biracial grandchildren, leading to a gathering of the whole family — honestly documented as not easy, but workable.
→ The story became Wojcicki's illustration that genetics connects people who would never otherwise connect, and shows that differences are fabricated rather than biological.
Common mistakes
Applying 'move fast and break things' to consequential data
Wojcicki explicitly rejects the tech default because customers make irreversible life decisions on the data. What breaks isn't a feature, it's a family.
Treating ethics as a compliance function bolted on later
23andMe's ethics capability existed from the founding, which is why it shaped the consent process rather than cleaning up after it.
Letting family consequences override individual access
The framework is not a veto. Wojcicki holds firmly that it's your DNA and you have the right to it — the family duty attaches to process and guidance, not to gatekeeping.
Is it for you?
Best for
Founders of genetic, biometric, ancestry, or relational-data products where one person's result discloses facts about others who never opted in.
Not ideal for
Products whose data is genuinely self-contained, or contexts where slowing releases for ethics review would have no consequence to weigh.
From the transcript
“We have found and we've taken that position it's your DNA and you have the right to access what is fundamentally about you but it's…”
“Our first scientist that we hired outside of the founding team actually ran our whole ethical legal social interaction so it's always been a really…”
“We never run fast and break things ever like we think through every data release and every set of information and what are those consequences…”
“I read them the letter and I go you know you you guys better be right because this woman just changed her whole life based…”
From the episode
Anne Wojcicki: How 23andMe is Disrupting the Healthcare Industry
Anne Wojcicki