Founder and CEO
At the end of the day what we do that's different from other people is that we can see more.
Interview by Heidi Legg
It is hard to not believe we are the digital baby era. Many of my children’s peers are in-vitro babies, a few traditional couple friends chose donor routes after many failed attempts and our LGBT friends use sperm banks and carriers. Regardless of the journey, most young parents I know used some sort of testing along the way. And with genome technology on rapid fire, the testing is becoming more and more sophisticated and parents looking for solutions are within arms reach of one. Yet, I found myself staring in awe when a bus drove by me in Harvard Square with a full-length ad for California Cryobank showing a smart looking white male changing into a super hero suit that read “Be A Hero. Sperm Donors paid up to $1200.” It took me aback for a second. It seemed so matter of fact, so utterly unabashed and then I realized, well, it is. My friend, Jessica Shattuck, wrote a great book on the contemporary complications of this subject called Perfect Life leaving Gattaca to begin to feel, well, rather 90s. The Kids Are Alright and technology in the baby space is only growing.
But the era is still young and entrepreneurs like Anne Morriss are emerging in the space even when they weren’t ever expecting to join the industry. When Morriss gave birth to her first child, Alec, he was born with a rare metabolic disease, MCADD, that affects 15,000 babies born in the US each year. The disease can be fatal in infancy and is sometimes misdiagnosed as SIDS or Reyes’ syndrome. With the exception of a limited number of carrier testing options, the vast majority of genetic testing has been done post conception. I sat down with Morriss to learn how Genepeeks is changing the landscape.
What is Genepeeks trying to do?
We are trying to give parents a new way to protect their future children. We are starting in the donor sperm industry with families who for whatever reason are using a sperm donor to conceive. Our Matchright technology identifies risk for 500 severe pediatric diseases at a very high sensitivity. On average, we look at thousands of points inside a gene where things might go wrong. The gene responsible for Cystic Fibrosis is a good example: the current industry standard is to look at roughly 100 mutations, whereas Genepeeks looks at 6,000 places on the gene where a damaging mutation may occur.
Who is your market?
Either their partner's a woman, or there is a partner who's not fertile, or you're a righteous single mom and you're doing this on your own. In fact, the single mom is a booming part of the market and those are the people that I'll do anything for, because it's just so brave.
What percentage of the market is “single moms?”
It’s about 25% of the market right now and that number is probably going up faster than the other two segments: lesbian couples and infertile husband.
What can I currently check about a donor?
Hair color, eye color, education, family history, hopes and dreams, why they may have chosen to donate. It's that personalized and we're not trying to change that part of the experience. That will still exist. Historically, they've only screened donors for two diseases: Cystic Fibrosis and Spinal Muscular Atrophy (SMA).
Where there's suddenly opportunity is around this exciting innovation in the genetic space. Now you can do all of this very powerful testing to identify genetic disease risk. With Genepeeks, we are going from two screened diseases to 500.
What are you offering that surpasses what's available?
We really look ahead at what happens on the genetic level. The innovation at the core of the company is a view into the future that really honors and reflects that complexity. At the end of the day, with our patented technology, what we do that's different from other people is that we can see more.
It's the combination of genetics and sophisticated math. It means we can see risk for more diseases. We can see risk for different kinds of diseases. We can see risk at a higher sensitivity. My co-founder Lee Silver, professor of molecular biology at Princeton, invented this methodology.
What our technology does is predict the genetic profile of a hypothetical child, pre-conception. We explore every donor in our database to find a match. We literally make digital babies.
What diseases are you excited about eliminating with this technology?
It's interesting because all of the diseases are fairly rare in isolation but when you add them up and when you get to 500, it's a fairly large percentage of the diseases that affect kids. In total, roughly 15% of pediatric deaths and hospitalizations fall into one of these 500 diseases, so we can have a pretty meaningful impact.
You have two sons and used donors for both. Were you worried when you went through this process?
No. I just assumed that whatever innovation had happened in the lab had made it into the clinic, and that the industry was using the latest science to protect my family and me. But when Alec was diagnosed with MCADD, I got interested in this stuff.
What was really motivating to me was there was all this amazing stuff locked up in the academy six blocks from here in Kendall Square and the Broad Institute.
My background is not in science. My background is in getting shit done in difficult environments.
Is Genepeeks the only one doing this?
There are a couple companies out there chasing this problem of genetic screening for fertility.
There are a couple of ways you can intervene on genetic diseases: You can make sure that there's a fantastic health care system for kids that are born sick or you can do newborn screenings, which is a public health achievement, and what saved Alec's life. The minute kids are born, you can find out if there's anything that's not working perfectly in their bodies and then you can make sure that you're vigilant in managing that care correctly. And you can intervene, which we, as a society, do a lot, yet we don't like to talk about it.
Today we do a lot of testing when there's a pregnancy and where one can make a decision with that knowledge. Sometimes that decision is, 'all right, I'm going to prepare for the chance that my kid will need some extra attention,' and sometimes people choose to terminate the pregnancy if the news is really devastating. Where we're intervening at Genepeeks is pre-pregnancy, and that's motivating to me.
We are flagging the risk before there's an embryo, before there's a pregnancy and we're saying,' okay, we can get this information now sooner than we could ever get it before.'
How good is the science?
Part of the criteria for these 500 diseases is that the science is really good. These diseases are very well understood. In the classic recessive disease model, if you're a carrier and I'm a carrier, there's a 25% chance that our child will have a disease. That's the classic model but in recessive diseases, there's typically no awareness that there's any risk. In my family, there was no history of MCADD deficiency, or for the donor. It's not that the donor didn't disclose or that the sperm bank hid it from me. It was that we were silent carriers and it turns out we're all silent carriers.
Every single human being, scientists now know, are carrying risk for some rare recessive disease. But the world is not up in arms about this because the math doesn't work out that frequently. Until now, we hadn’t really been able to do anything about it because it was too difficult and expensive to make it usable in any way. But now we have all this genetic technology and we're starting to change our behavior.
I'm very grateful for this industry. My family wouldn't exist without it and I think it's filled with people who are trying to do the right thing every day, who put their neck out to do this in the '70s and '80s when the world was uncomfortable with it. Now we have the ability to make the process even safer for families and kids, and that's what we're trying to do.
What public opinion do you want to change?
I would like to change the public opinion that genetic technology is scary and that there's this inevitable slippery slope towards a Gattaca hell-scape where we're designing all of our children. I'm much more optimistic about the species than that point of view suggests.
What will happen?
I think, like any technology, we’re going to come up with thoughtful ways to use it to promote the public good. I think the good far outweighs the risk. I'm obviously wildly biased on this, but I believe that for the first time in human history we have a chance to fight back on some of these diseases and reduce the number of kids who have to pay the price of living with these conditions.
For thirty percent of rare diseases, kids aren't seeing their fifth birthday, and we can really make a difference now. The technology and the costs of awareness are lining up where we can finally fight back.
There is definitely religious fervor around creationism and people building. What do you say to these critics?
It's interesting. This issue doesn't line up along traditional left/right lines. I think some of the loudest critics would identify on the left of the political spectrum.
What do they say?
That this is dangerous stuff that needs to be contained and we have to proceed with extreme caution. The specific critique depends on the technology. I absolutely think there's a lot of wisdom and truth in the point of view that we should be thoughtful about how we develop and use this kind of technology.
What is the worst-case scenario in their minds?
This is not my point of view so I won’t do it justice, but I think the fear is around this 'designer baby' phenomenon and that there will be an elite group of people that have access to these kinds of technologies. People's imaginations have really kind of run with some of this stuff and I don't deny anyone their fears, but I don't share them.
If you want to protest inequality, I wouldn't suggest starting here. There's gross inequality, particularly at a global level, in terms of access to resources and that's an entirely different conversation. If you look at access to medical technology and the way innovation is diffused, we have come up with reasonable methods to get costs down and to give people access and to create a standard of care that's universal.
Where do you want to keep the conversation?
I want to keep the conversation on what can go right. If we really solve this problem, what does that mean, what's the upside? It's more emotional to talk about what can go wrong, but what if we can really get this right? And what if we could live in a world where it's a given that kids make it past age five? That's an extraordinary possibility and that's certainly what's motivating to me.
Do you offer this service to people not using a sperm bank?
We eventually want to provide the service for anyone planning a pregnancy. Providing this service to a family who isn't using a donor is more complicated, and we're not there yet, but we hope to be there soon.
For these types of "traditional couples," many will likely use our technology in combination with a technology that's pretty common in the IVF world called 'pre-implantation genetic diagnostics' (PGD), where you can create embryos and then test those embryos for the disease that’s been flagged.
Are you the first to emerge with this sort of product for donors?
There are other people who are in the business of identifying risk pre-pregnancy, but the scope of what we're doing is much larger.
My co-founder invented a really unique way to look at the genetic profile of a child pre-conception and we recently secured the patent on it. The technology simulates the genetics of reproduction and what it will allow us to do, ultimately, is not just look at these rare diseases but also look at more common and more complex diseases where multiple genes are involved. Mathematically there's no way to look at risk of those diseases without doing something similar to what he invented.
Will this market explode?
I don't know. The donor market is pretty contained. About 50,000 people every year go out and look for a sperm donor in the US and we're focused on the US market. We'll figure out international markets as we go but we're starting here.
Where's your head office?
New York. We have a satellite research office in Cambridge.
How many team members?
We are fifteen.
Do you think this offering will be ubiquitous in two years?
Yes, I do. Will GenePeeks be the one delivering it? I don't know if we will be the ones to pull it off. Will it be a standard part of reproductive care to try to identify risk earlier before you get pregnant? Yes, without question. And it's starting to happen. There are some companies out there doing a narrower version of this analysis right now.
I'm in Massachusetts. It's the health care capital of the planet and my youngest is two, but my doctor didn't ask if I wanted to do a test like this and that's already starting to change. It’s going to change very quickly.
I remember in 2002 when I was pregnant and a close doctor-friend in San Francisco told me to ask for a nuchal fold test. My doctor commented there was suddenly a surge in women asking for it as though it were a new trend.
Exactly. That’s one of the human ways that change happens in any industry, including health care. We think, 'oh, it's health care so these things are done more systematically.' There should be a committee that meets, reviews the technology, and decides, like there is this all-knowing, all-powerful committee making these very rationally scientific decisions for us all. But, in fact, this industry is just as human as other industries where a patient comes in and says, 'oh, I heard from my friend...' and the doctor says, 'oh, that's interesting. Someone else brought that up. Maybe I'm going to bring that up when we have a staff meeting,' and that's just the reality. It’s not a criticism of health care in America. I believe in just operating within the constraints of reality and that's how I see change happening in organizations. I want to work with that kind of natural flow of diffusion of ideas and innovation.
The US has a terrible track record in dealing with women and their reproductive health and supporting that, do you think you will fall into that fray or do you think because you are dealing with both genders, you will avoid this?
Even though you are talking about men and women making babies, the reality is that all the research shows that women are the decision makers when it comes to reproduction. It’s not like your husband came home and said, 'have you heard about this nuchal test?' I think this will continue and that's why these issues do fall into women's health. As soon as women start thinking about bringing a child into the world, we start thinking about how to protect that child's health. We start taking folic acid and cutting back on the coffee. A very protective instinct kicks in right away. Genepeeks is a natural extension of that instinct.
Where do you get your news?
I start the day with the New York Times online. I'm embarrassed about how reliant I am on one source right now but, in launch mode, it's a time issue.
I'm not a big tweeter but I do follow a lot of voices in my space and I follow both science voices and science journalists. I follow a fair amount of amateur reporter voices, for lack of a better term, people tweeting and blogging and writing about my industry. For me, some of the most exciting and interesting voices are people whose day job is not journalism but those with their sleeves up who are really wrestling with the issues. I find myself gravitating towards those voices and I respect a lot of the journalists who are focused on science and scientific storytelling and translating innovation into accessible language.
I also read the LA Times but I think that's as an escapist. Nothing could be further from my life right now than Los Angeles, California and even if it's just for thirty seconds, even to just look at the weather report and to hear what LA's talking about.
A date you're looking forward to?
The American Society of Reproductive Medicine in Hawaii this year.
I am not shy about childcare. When I’m not in New York or at our office in the Cambridge Innovation Lab, I'm in the house. It's a privilege to work from home and I get to do that fairly often. Thanks to this, I can hear my kid's voices and see them, but I also have someone else on site getting apple juice and playing with them and this is a huge luxury.