Population genomics · Founder populations
Sequence Bio
A St. John’s company betting that Newfoundland and Labrador’s founder population can reveal drug targets other populations hide. Thirteen years in: two population papers, a royalty deal with the province, and a new study enrolling.
Half a teaspoon of saliva
In the summer of 2019, in three family practices on the Avalon Peninsula, a research nurse started handing people a plastic tube. Spit into it. Sign a consent form. Fill out a questionnaire. Let the study read your medical record.
That was the whole ask. The company collecting the tubes was Sequence Bio, legally Sequence Bioinformatics Inc. Its pitch was that the DNA in those tubes was one of the most useful research resources on earth, and that this time the people it came from would get something back.
The pilot wanted 2,500 volunteers. On September 16, 2019, co-founder Chris Gardner wrote on Hacker News that “over 1,200 people have already donated their genetic and personal health information.” Getting there had taken four years of argument, two rejected applications, and a lawsuit against the company’s own regulator.
Why Newfoundland
Around 25,000 settlers arrived from southeast Ireland and southwest England in the 18th and 19th centuries, then stayed in isolated fishing communities. Variants that are vanishingly rare elsewhere turn up often enough here to be found in hundreds of people rather than millions. The province also has some of the world’s highest rates of type 1 diabetes and familial colorectal cancer, and one health system holding decades of records.
That resource has a history. In a 2016 address in St. John’s, the federal privacy office called the province a “genetic gold mine” in the same speech that recounted the 1990s Baylor University researchers, nicknamed the Texas Vampires, who collected samples and never returned the data provincial clinicians needed. The Health Research Ethics Authority was created in 2011, it has said, in the aftermath of that episode.
A diagnostics company that became a data company
Tyler Wish and Chris Gardner founded Sequence Bio in 2013. Gardner has said the original plan was a colorectal cancer screening test, and that the pivot came when he decided the data behind the test was worth more.
The money was local first. In July 2015 Venture Newfoundland and Labrador, backed by the province, BDC Capital and private investors, made its first investment: $300,000. By October the company had announced a $1 million seed round and a provincial partnership aimed at enrolling 100,000 participants. In August 2016 Data Collective, now DCVC, led a $3 million round the company called the first Silicon Valley venture investment into Atlantic Canada. That November, Wish stepped down and Gardner became acting CEO.
The fight with the regulator
Sequence Bio submitted its genome pilot application to the Health Research Ethics Authority in August 2017. In March 2018, with no decision after 197 days, it asked the NL Supreme Court to compel the authority and its board to rule. The day after that filing, the board rejected the proposal, 203 days after submission. An earlier colorectal cancer application had already been turned down.
The dispute went political. On March 8, 2018, MHA David Brazil raised it in the House of Assembly; Health Minister John Haggie answered that the board’s recruitment problems had been temporary and remedied. In May the company released letters from other researchers, and its chief scientific officer Michael Phillips said publicly that the board was broken. The authority defended its record, and said it had hired a consultant, added staff and recruited new members. In June 2018 Justice Vikas Khaladkar ruled the case could proceed. That August, New Brunswick approved a similar pilot in about 30 days.
Nothing in the record establishes that the board acted improperly. It establishes that two applications were refused, that one took 203 days, that a judge found the timing question worth hearing, and that each side says the other was the problem.
What came out of it
The pilot produced published science. In April 2023 Communications Biology carried an analysis of 1,807 participants showing the province as a mosaic of founder subpopulations traceable to regions of Ireland and England. In October 2024 the European Journal of Human Genetics published a study of 1,110 Y chromosomes.
The 100,000 person project announced in 2015 has not been shown to have happened, and the NL Genome Project website, accessed in September 2026, still describes a pilot and lists no participating doctors. The company has a different shape now: Lynn Healey as CEO, a Memorial University collaboration on familial multiple sclerosis, a ten year Benefits and Royalty Agreement with the province, a vendor of record designation from NL Health Services, and, on March 4, 2026, a new Study of Genetic Causes of Inherited Disease with chief scientific officer Tom Barber as principal investigator. Enrollment is open.
What is proven, and what is still claimed
| Evidence | What the record shows | Source type |
|---|---|---|
| Population paper, 2023 | Gilbert et al., Communications Biology 6:469, Apr 28, 2023. Profiles of 1,807 NL Genome Project participants against Irish and English panels. | Public record |
| Population paper, 2024 | Zurel et al., European Journal of Human Genetics 33:98, online Oct 29, 2024. 1,110 Y chromosomes, 5,761 markers, 160 terminal haplogroups. | Public record |
| Ethics decisions, 2018 | Two applications refused by the Health Research Ethics Board: a colorectal cancer proposal, and the genome pilot, at 203 days. | Independent |
| Court ruling, Jun 2018 | Justice Vikas Khaladkar let the case proceed, calling the 30 day question one of public importance. The remedy sought was a ruling on timing, not a reversal. | Independent |
| Legislative attention | Raised in the House of Assembly, Mar 8, 2018. Minister John Haggie called the board’s recruitment problems temporary and remedied. | Independent |
| Enrollment | Pilot target 2,500. Over 1,200 donors by Sept 2019 per the founder; 1,807 appear in the 2023 paper. No later total published. | Company-stated |
| The 100,000 person plan | Announced Oct 2015 with the province and Genospace. No public evidence found that a cohort at that scale was built. | Differs from the record |
| Benefit sharing | Ten year agreement, Apr 29, 2025: 1 percent of the first $5 million of gross revenue, 1.5 percent to $25 million, 2.0 percent above, deferrals tied to profitability. | Company and government |
| Drug targets and partners | No named pharma partnership, licensing deal or drug target found as of September 2026. | Not found |
Read plainly: the science is real and published, but it describes a population rather than a disease mechanism. The company has mapped the founder effect in detail and has not yet shown a target that came out of it. Benefit sharing now has an answer on paper, and it pays only if discovery works.
What to watch
- Enrollment in the 2026 study, and whether it reaches further than the three clinic pilot did.
- The first named drug target or pharma partnership. That is the event the royalty agreement is written for.
- Any published disposition of NL Genome Project samples and data, which participants were told they could withdraw.
In their words
“My family has lived in Newfoundland for over 200 years and I wanted to see commercial genetic research done in a way that puts Newfoundlanders first.”
Chris Gardner, co-founder, Launch HN post, 2019 · Founder
“When the person who makes the rules does not follow them, there is no easy choice.”
Chris Gardner, CEO, to CBC News, 2018 · Independent
“My experience since I have been in Newfoundland and Labrador has been that the HREB here is out of sync with the rest of the country and they aren’t working with the researchers in a collaborative fashion.”
Michael Phillips, CSO, to CBC News, 2018 · Independent
“We are strongly committed to upholding the highest ethics standards for the review of research and to be an organization where continued quality improvement is an ongoing commitment.”
Health Research Ethics Authority, to The Telegram, 2018 · Regulator
“there is nothing in a section of a statute containing a time limitation that requires the expertise of a human ethicist to interpret.”
Justice Vikas Khaladkar, NL Supreme Court, 2018 · Court
“Once we’ve released it, it can be very difficult to have some kind of control over it and how it is going to be used.”
Daryl Pullman, Memorial University, to CBC News, 2019 · Independent
“We firmly believe that participants own their data, and at any time they can withdraw from this project and their data will be deleted.”
Chris Gardner, CEO, to CBC News, 2019 · Independent
“the province nevertheless needs to take more direct responsibility for its development and to ensure that any potential benefits from exploiting it are shared with the population that is currently bearing the increased burden of disease.”
Janelle Skeard, Journal of Community Genetics, 2024 · Peer reviewed
Related companies
Sources
- Public recordGilbert E et al., Newfoundland and Labrador mosaic founder population
- Public recordZurel H et al., Y chromosome diversity in Newfoundland and Labrador
- Public recordRecords pull: no FDA record, trial, grant or Form D
- Public recordGenomic Privacy on the Rock, Patricia Kosseim
- Peer reviewedSkeard J, Unnatural resources?
- IndependentCompany wants court to speed up genome project application
- IndependentEthics board roadblocks pushing genetic research company out of N.L., CEO says
- IndependentBiotech firm says researchers back claim oversight board is broken
- IndependentJudge rules Sequence Bio case against regulator can proceed
- IndependentYour DNA, please: N.L. biotech hopes genome project will lead to new drugs
- IndependentSequence Bio raises $3 million in round led by DCVC
- FounderLaunch HN: Sequence Bio (YC S19)
- CompanyBenefits and Royalty Agreement with the Government of NL
- CompanyTaking on inherited disease, together
Profile researched and written by Healthcare Discovery. Last updated September 29, 2026.
