One of the first major crashes I experienced as a chronically ill person happened on an unusually sunny January day in New York City. It was 2023, and I was riding my bike with a friend, flying high from the exercise. We’d covered just over 40 miles on mostly flat ground, a longish ride, but not out of ordinary for me. And that’s when it started. About 15 minutes from my apartment, my body gave out. 

At first it was just my head — it grew hot, and within minutes, my brain felt like it was on fire. Pretty soon, the rest of my insides were burning up, too. As the skin on my arms and face turned red, and my limbs grew heavy, I felt bewildered. I was fine just minutes ago, I thought. I was tired, but the ride didn’t feel that hard. 

“I think I need to stop,” I told my friend. I couldn’t think. I drank some water, ate a snack, and tried to compose myself alongside the bike path on Eastern Parkway. I don’t know how long we stayed there, but my condition didn’t really improve. Eventually we got back on our bikes and pedaled, much slower than before, to my apartment. I turned 34 that day, and what I remember most is  the time I spent in bed after the ride, while my immune system went berserk. My spouse was in Vancouver, Washington, visiting family for the holidays, and I was on my own. So I just laid there, barely able to move, until the following evening. 

Three years later, I barely crash anymore. I’m still chronically ill; I have long covid, and two other conditions: postural orthostatic tachycardia syndrome (POTS), which hinders my ability to stand for long periods, and mast cell activation syndrome, which can cause my body to randomly react like I’m allergic to something even when I’m not. This means I have to be careful about how I spend my time and what I eat. But as I write this, I can’t remember the last time I spent an entire day in bed. “Sheer luck” is probably the best way to talk about at least some of the improvements I’ve experienced. “Privilege” is another. I was able to see curious and knowledgeable physicians early on, and I have insurance that covers most of the meds I take. 

But at least part of the credit for the stability I currently enjoy goes to an unlikely tool: the fitness tracking devices that I purposefully “misuse” every single day.  Because over the last nearly three years, fitness trackers have helped me do the very opposite of what they were originally intended to do. I use them to do less — not more. 

The proper way to talk about what I’m doing is to say that I use fitness trackers to “pace.” Pacing is an energy management technique that involves balancing periods of activity with periods of rest to avoid physical and mental overexertion. The idea behind the practice is that by carefully planning and prioritizing the tasks and activities you do throughout your day, people with energy-limiting conditions like mine can avoid falling into a cycle of repeated crashes or worsening symptoms. Pacing isn’t a cure or even a way to improve your overall condition, at least not inherently. But for many people with these conditions — folks with ME/CFs (formerly referred to as “chronic fatigue”), POTS, fibromyalgia, or even Parkinson’s, for example — pacing can make life a little more predictable.  

“It’s energy conservation,” says Raouf Gharbo, an osteopath at Virginia Commonwealth University who specializes in rehabilitation. Gharbo often tells his patients that pacing can look a lot like “spoon theory,” where a disabled person understands that they have a finite, but variable number of “spoons” — a proxy for a unit of energy — that they can “spend” in a single day. With pacing, the idea is to avoid running out of spoons by carefully budgeting them. 

Pacing is hard to learn and even harder to do consistently. And if you ask me, that’s because pacing honestly sucks. It means learning to pay close attention to how your body responds to every little thing you do. Making peace with holding back, slowing down, being patient, and saying “no” to things you might enjoy. Not to mention having to learn to ask for help if it doesn’t come naturally. Plus, your condition is likely always evolving, so you also have to adjust your pacing technique to match it. Something as simple as a change in the weather might alter the number of spoons you have to spend. 

All that to say that pacing didn’t come naturally to me. And yet I managed to learn. And I doubt I’d be this far along or this good at it without the two fitness tracking bands I wore, one one each bicep — like a total dweeb. 

Less is more

Five months after that January bike ride, I had an idea. I went digging in my closet for my “tech box,” a giant plastic Tupperware in which I keep discarded tech devices that I’ve yet to recycle, and fished out a Whoop 4.0 band. I had stopped wearing it more than a year ago because it had started to feel like overkill for the type of sports I practiced. But I had an official POTS diagnosis now, and as part of my treatment plan, my cardiologist put a lot of emphasis on getting good sleep. So, I decided to strap the Whoop back on, thinking that maybe I’d learn something about my sleeping patterns if I used it for a month or two. 

But I ended up using it for a lot longer than that. Turns out, I got a lot more out of the Whoop as a chronically ill person than I ever did when I used it for fitness. 

It started simply enough. Whoop has a feature called Recovery that the company says is a measure of how ready the body is to perform. The score incorporates a bunch of metrics like a user’s resting heart rate, their heart rate variability — a measure of the variation in the amount of time between heart beats — their skin temperature, and how well they sleep, among other things. The app provides a recovery score every morning and color-codes it. For the average Whoop user, green recovery days are supposed to be great days to push yourself in training, whereas yellow days are what Whoop dubs a “normal recovery” day, meaning a day during which your body is “maintaining its ability to perform,” but shouldn’t be pushed too hard. 

Although these scores can be controversial (see the Whoop Subreddit for complaints), I found them shockingly accurate after I got ill. Now, when my recovery was green, I found myself being able to do more. I was more resilient. But more importantly, on yellow days, I noticed that I was more likely to crash. The trend was even more obvious when I woke up in the red, meaning in the 1 to 33 percent recovered zone. 

So, I started to use my recovery score to make decisions about how I’d go about my day, putting more limits on myself and the kinds of activities I did on yellow days and red days. All of a sudden, I had a way to loosely determine how many spoons I had at my disposal at the start of every day. 

That was just the start. Eventually, I noticed that when my daily strain score — Whoop’s way of measuring cardiovascular and muscular exertion on a scale from 0 to 21 — hit 10 or above, I would be likely to crash over the next few days. So I started to check the app at regular intervals throughout my day in the hopes that I might avoid reaching a strain score of 10. (For context, Whoop considers any strain score between 0 and 9 to be low.)  That’s when I realized that I’d found a way to automate my pacing practice. As long as I remembered to check the app a few times a day, Whoop was doing the monitoring for me. 

It’s probably worth noting at this point that I started this experiment well before our Secretary of Health and Human Services, RFK Jr., suggested that “every American” should wear a fitness tracker within four years. I actually don’t agree with that take at all, and I have significant concerns about what tech companies are doing with our health information, especially given how cozy Silicon Valley seems to be with the current administration, which itself seems to hold a particular disdain for the chronically ill, as well as other forms of disability like autism. 

That said, I also feel pretty strongly that sharing this pacing technique could help a lot of people with energy-limiting illnesses. So with those disclaimers out in the open, I’m still writing about it. And the truth is that I’m not the first person to pace using a fitness tracker, and I won’t be the last. A lot of other disabled people are using their smart watches and trackers in exactly this way already.

“I mainly use the watch to monitor how new medications affect my POTS, and whether or not certain activities are too much for my POTS to handle,” says 26-year old Alabama resident Samhit Utlapalli. In 2022, Utlapalli started to faint two or three times a day, following simultaneous covid and flu infections. They eventually received a diagnosis for POTS, which causes significant increases in heart rate when transitioning from lying down to standing up. People with POTS often experience fatigue, dizziness, and fainting. 

One day, after Utlapalli started experiencing regular fainting spells, they came across a post on Instagram that intrigued them. “I have a lot of other disabled friends, and on Instagram there was this girl — we’re not super close or anything — and she also has POTS,” Utlapalli says. “She posted about how she was using one of the Garmin watches to monitor her heart rate and keep track of how she was doing throughout the day and what she needed to adjust.” Soon thereafter, they purchased a Garmin watch in the hopes that it might help them manage their own condition. And it did. 

Today, Utlapalli uses a Garmin Venu 3S when they’re out and about. If they see that their heart rate is getting high, they might decide to “sit down for a little bit,” or “chug a shitload of water,” they say. 

There’s a word for what we’ve been doing with our fitness trackers — we’re “cripping” them, says Sarah Homewood, a professor at the University of Copenhagen who researches human-centered computing and specializes in self-tracking. The art of cripping is, in part, “about hacking or changing the use of existing technologies” to suit the needs of disabled people, she explains. 

Homewood began studying the ways in which people with energy-limiting conditions use self-tracking devices in 2021, after she developed long-covid. To monitor her heart rate, she bought a Fitbit. It was only after that that she noticed posts online in which other disabled people were sharing their experiences with these kinds of devices.

“I started to see people discussing this on the Facebook groups, the support groups,” Homewood says. “And so, as a researcher, I was like, ‘Oh my God, this is so interesting.’” 

Homewood ended up studying her own experience and the experiences of other people with energy-limiting conditions who use self-tracking technologies. Through this work, she and her colleagues determined that the benefits of using a fitness tracker can extend beyond pacing. 

For instance, many of the study participants reported that the data gathered by these devices was helpful in getting family members, friends, and doctors to take them seriously. 

“So many of my participants talk about ‘data as proof,’” Homewood tells me. Being able to show the people around you that your body isn’t recovering after a full night’s sleep or that your heart rate spikes when you sit up can make a big difference in how friends and family respond to your disability, especially given the stigma that surrounds many of these conditions. 

In the study, participants also noted that pacing with fitness trackers helped them gain a sense of control. But Homewood tells me she prefers to talk about how these devices can help users better “understand” their condition, rather than gain control over it. That framing “feels a little bit less like it’s setting you up for failure,” she says, because a big part of making sense of an energy-limiting condition involves the realization that you often have very little control over how it manifests. 

The Whoop helped me better understand the basic parameters that tended to impact my chronic illness. But it was never intended to be used this way, so I’ve had to train myself to ignore some of its features, like its suggestions for how much I should push myself each day (that number is almost always wrong). The Whoop isn’t nearly as bad as the Apple Watch in that respect — I say this despite certain improvements — because unlike the Apple Watch, the Whoop app will very visibly suggest that a user prioritize rest when they’re in the red recovery zone. But for people like me, there’s still no obvious way to turn off its recommendations for hitting daily strain goals. 

Another major downside of using the Whoop band for real-time pacing was the fact that I had to check the app constantly to make sure I didn’t go above a certain strain score. And then, once I knew how much strain I’d taken on, I had to make some educated guesses about how much gas I still had in the tank to do a given activity without hitting my self-imposed strain score limit. I got pretty good at it, but it wasn’t ideal. 

Most of all though, I kept wishing that Whoop would implement one very specific feature: I wanted to be able to set the device to vibrate or send me a notification whenever my heart rate went above 120BPM outside of a workout — like, say, when I was just standing for too long. 

A feature like that would have been a game changer for me, given my POTS diagnosis. I’d often think about how great it would be to instantly know when it was time to sit down, or slow down. I had no reason to think a feature like that would ever exist in the Whoop app, but I still wanted it. 

My wish was eventually granted toward the end of 2024 — in the form of the Visible band. 

Design for disability

“Activity tracking for illness, not fitness,” is how Visible markets itself to people like me. And unlike almost anything else on the market, the device’s main function is to help people with long covid, Me/CFS, and other energy-limiting conditions pace. 

The idea for Visible was borne out of CEO Harry Leeming’s own experience with long covid, which he developed after a mild infection in 2020. Wishing to keep track of his recovery, he went looking for a wearable designed for people like him. “I remember googling for illness trackers, and I was expecting to find Whoop, Fitbit, and Garmin — but designed for illness,” he tells me. But nothing seemed to really fit. 

So, Leeming decided to see if a conventional fitness tracker might help. He opted for a Whoop, which he used along with an Apple Watch. But it didn’t satisfy, and it wasn’t long before Leeming, who is a mechanical engineer, started toying with the idea of launching an app and a wearable that would be specifically tailored for his use case. By 2022, the Visible app was up and running. 

I started wearing the Visible band in October 2024. Putting it on felt instantly familiar because it looks a lot like the Whoop band (it’s actually the Polar 360). But I soon realized that for real-time pacing, Visible was far superior to Whoop. Visible has a killer pacing feature that it calls the PaceSetter. 

The PaceSetter is this little ticker that moves along a timeline throughout the day. It works by setting the pace for how fast a user should go through their “PacePoints” in a day. PacePoints are the unit that Visible uses to measure how much energy a user has to spend in a day — they’re directly tied to a user’s heart rate — so the PaceSetter’s goal is to make sure that a user doesn’t run out of PacePoints before the day is through. When the feature is enabled, a user will get an alert whenever they start to surpass the PaceSetter, which helps people know when they’re pushing too hard and need to slow down or rest. 

When I started wearing the Visible band, I stopped having to devote a bunch of mental energy to figuring out how many spoons I had left for the day based on my Whoop strain score. And that felt incredible! As long as I didn’t get a PaseSetter notification, I knew I was doing alright. 

Visible also helped me figure out which activities were costing me the most thanks to its activity tagging feature. Much like the Whoop, the Visible app provided me with a daily heart rate graph, but with the added ability to place tags within the timeline to indicate which activities I was performing during a given period. The app keeps track of those tags and would provide me with the average number of PacePoints I would use on those activities in a section of the app called “activity insights.” This feature means that a user can actually find out — for real — how much energy they tend to use up when they do anything from reading a book and working at a computer to showering and cooking dinner. 

Because of this, I learned that pickleball was more energetically costly for me than a bike workout, probably because pickleball involves a lot of standing. I also figured out that showering — an activity that can cost me quite a bit when my symptoms flare — had a negligeable impact when I was feeling generally okay. So, as long as I kept my showers short, I was able to stop factoring them into my pacing practice altogether. 

Finally, Visible delivered the feature I’d spent so much time wishing for: exertion notifications. When my heart rate went into what Visible suggested was my “overexertion zone” for more than a few minutes, I’d get a phone notification. The feature was extremely useful on bad days when I just didn’t have the energy to pay attention to how I was feeling, on top of just trying to accomplish basic tasks. 

“It can ping you, and be like ‘hey, slow down,’” says Visible user Emerson, who asked that we omit their last name to preserve their privacy. Before finding the Visible app, Emerson tried using an Apple Watch to pace, but they found its fitness-related alerts distracting. “[I was] getting annoyed when I’d get alerts telling me I was doing a great job being active when I was suffering.” With Visible, there are no notifications pushing you to do more. Emerson says they can focus on their life and hand the task of monitoring their heart to the app. “That was a big energy load off the backburner of my brain constantly,” they told me. 

Day-to-day, Visible makes it easier to pace. But users can also use the tracker to keep track of their illness on a month-to-basis, thanks to a Monthly Check-in feature that asks users questions about their ability to perform various tasks and activities, like shopping for groceries, sitting up in bed for half an hour, or working a full work day. Visible users who fill out the questionnaire — which is also available to the public — get a score out of 6 that allows them to track how their condition is progressing from month to month, if at all. 

“For a while, I was declining, and I didn’t know I was declining,” Emerson tells me. Seeing their functional capacity results in the Visible app helped them recognize the trend and take action. 

The more I used the Visible app, the more I grew to appreciate its design. The engineers at Visible, many of whom are disabled themselves, tried to make the UI as simple as possible to limit how much energy users might expend while looking at it. So, for example, there’s very little text on each page to make sure users aren’t overwhelmed, and the scale that’s used for symptom tracking only goes from 1 to 4. The idea here is that by simplifying the scale, users should spend less time thinking through the ratings, the kind of task Leeming calls “disability admin.” All told, Visible is extremely well thought out and genuinely fills a gap for people with energy-limiting conditions. 

But despite everything Visible does so well, the armband never fully replaced my Whoop. Instead, I just wore both — one on each bicep — for more than six months. 

The fact that Visible didn’t track my sleep was the biggest reason I kept wearing the Whoop. I also found myself getting annoyed with Visible’s equivalent to Whoop’s recovery score – a feature Visible calls the “morning stability score.” Visible didn’t use that score to adjust my PacePoints budget at the start of each day. So on most days, I would adjust my budget manually, something I never quite got right.  

The Whoop band, meanwhile, (sort of) does this by adjusting users’ target strain score based on how well they’ve slept and how much they exerted themselves the day before. I didn’t use this information the way Whoop intended, but the feature was still valuable. If Whoop thought I should do less on any given day, I’d listen to it. 

I mentioned these critiques to Leeming when we spoke. He told me that big changes are coming to the app, and those updates will address many of my complaints. Some users are currently beta testing sleep tracking, and Leeming says the new functionality should be out in the coming months. The Visible team also plans to introduce an automated version of the morning stability score later this year. 

That’s not the only good news coming from the Visible team: Leeming says the Visible app will soon be able to predict when a user is at risk of experiencing an energy crash. The company validated this technique in a study — which is still in pre-print and hasn’t been peer-reviewed yet — that it conducted in collaboration with researchers at Yale University and Mount Sinai, among others. “That [study] will inform the next version of our Stability score in the app, which will no longer be reliant on you inputting manual symptoms,” Leeming told me. 

This is part of Visible’s long-term vision: to move users away from having to answer questions about their health. “No one with these conditions wants to think more about their own illness than they need to,” Leeming says. “It’s a very different use case from fitness wearables where you’re really trying to hyper-optimize your health.”

A future, at rest

Last April, I stopped wearing my Whoop. Wearing both devices at the same time felt ridiculous, and I’d reached the conclusion that Visible would be more than enough on its own. And it basically was, for a short while. 

Thanks to Visible, I had gotten better at pacing and recognizing my body’s signals when I was pushing too hard. At the same time, my health was improving, so much so that I had started to ignore Visible’s exertion notifications. So in May, I decided to end my Visible subscription, too. 

I framed the decision as an experiment: I wanted to try my hand at pacing the old-fashioned way again, sans wearables. But to be honest, I was also hoping to offer my wallet a bit of relief. Paying for Whoop and Visible had been costing me $50/month; I was paying $30/month for Whoop and $19.99/month for Visible. And although Visible was less expensive than Whoop, I had to pay a one-time fee of $90 to get Visible’s fitness tracker (the armband is now priced at $79.90). So I genuinely hoped that the outcome of this experiment would be that I could manage well enough on my own. 

I had a chance to ask Harry Leeming about the barrier that Visible’s subscription fee might pose to the community he’s targeting. After all, that population is currently struggling to remain in the workforce. Leeming told me that he understands that many people who live with energy-limiting conditions face financial constraints that can put this app out of reach. That’s why Visible also offers a free version of the app that Leeming says will always be free. That version of the app doesn’t include access to the wearable device, but it can still provide some meaningful insights, he says. “Our long-term goal is to have Visible covered by insurers so that members can access it at no cost, though that process takes time.” That’s why Visible has been conducting research to demonstrate the app’s effectiveness, he says. 

For those who don’t want to pay Visible’s subscription fee, but who still want the benefit of using a wearable device, there is a free alternative — provided that you already own an Apple or Android watch. MindfulPacer is a free app that was developed by two University of Zurich researchers. The app, which was recently released on iOS and will soon be out on Android, includes features that are similar to Visible’s, like heart rate notifications. But the app’s design philosophy and implementation differs from Visible’s in important ways, mainly because it requires users to input quite a bit of data manually, which can be taxing on folks with a chronic illness.  

When it comes to pacing though, money isn’t the only barrier to entry. The act of pacing itself, even without an app, “is a huge privilege,” Visible user Emerson says. Pacing often means being able to say “no” to things and having people around you who can help when you need to slow down. Many don’t have access to that kind of support, and when it comes to pacing, “a lot of people can’t do it, and [they] are getting worse because they can’t do it.” 

It would be impossible for me to pace without my support system. That has always been clear to me. But could I pace without these wearables? As it turns out, taking a break from my wearables helped me realize how far I’d come over the last few years. Thanks to Whoop and Visible, I had learned to pace effectively — and even after I took them off, I was able to apply what I’d learned and continue doing it on my own. 

That said, after a few months, I did find myself missing some of the more general features that these devices provide, like sleep and activity tracking. I even missed Whoop’s AI coach to a certain degree, since I’d gotten used to it telling me about the outside air quality and pollen count first thing in the morning. I mentioned this to my wife one day and to my great surprise she told me that she missed me wearing them, too. When I wore a fitness tracker, I seemed more aware of my limits, she said. If my trends showed that I was running low on gas, I would immediately alter my day to allow for more rest. Without an activity tracker, she’d noticed that I was more likely to ignore or dismiss my own body’s signals. 

After that conversation, we decided to fit the cost of a yearly subscription into our budget. And when faced with the choice between Whoop and Visible, the device I opted to return to was Whoop — to the tune of $297/year. 

I didn’t go back to Whoop because I think it’s better than Visible. It’s not. I went back to Whoop because my health has improved to the point where the detailed information Visible can give me is now unnecessary. I pace more loosely now, which means I only need to check the app twice a day: once in the morning for my recovery score and once more at night, for my strain score. 

When combined, those two scores give me a pretty good sense of how much rest I need and whether I’m at risk of experiencing a symptom flare. I also stopped avoiding going over a strain score of 10, though I’m not pushing especially hard either. Most days, I just try to do what feels good — and prioritize rest.

Chronic illness or not, I know I’m not alone in that. Everywhere I look these days, I see fitness tracking companies increasingly putting an emphasis on balancing strain with recovery. Apps like Gentle Streak encourage users to avoid overexertion, whereas Garmin is finally giving people credit for napping. Even Apple has taken steps to warn Apple Watch users about the dangers of “excessive fatigue” by introducing its training load feature. 

And frankly, it’s about time. Exercise scientists have been pushing rest for years now, and yet even after the message had reached pro and amateur athletes, the apps that they used to track their workouts would continue to tell them that they should meet the same activity goals day after day, which can be a recipe for injury or illness. 

Whether we realize it or not, many of us — disabled or not — use these apps to tell us when we’ve been pushing too hard. When I spoke with researcher Sarah Homewood she told me that her research shows that people without energy-limiting conditions often use fitness trackers to “validate resting.” And though they may not be aware of it, those users are engaging in a form of pacing, she says. 

Of course, there’s an important distinction between what I’ve been doing and what the average Whoop user does. I think of health as a spectrum — and something that, under stress, can be depleted. But people who don’t have energy-limiting conditions don’t tend to think of health as finite, Homewood says. Rather, they might think of it as an “exponential thing” that can be optimized in an unlimited way. And resting is just part of that optimization; it’s something that can help them live longer, rather than what’s keeping them alive. 

That’s a notable difference, but I don’t really care what makes you rest. I just know it’s essential for performance and for life. 

In December, I decided to tell Whoop’s AI coach that I have a chronic illness. It was another experiment; I don’t usually recommend sharing private medical information with any AI. But in this case, given how I use the app, I’ll admit that the results have been kind of nice. 

The AI coach seems to be using a slightly softer tone with me in the mornings when it tells me how well I’ve slept. It also regularly checks in with me about my symptoms and my energy levels. I don’t usually respond to these prompts, but on a whim one evening in February, I did. I told the Whoop bot that I was starting to feel some unpleasant symptoms coming on after a busy week at work. 

Its response? 

It recommended that I lie down in a room with dimmed lights, no screens, and an ice pack on my head — which is exactly what my spouse would have told me to do if I’d let her know. Clearly, I really do still need those reminders.

Three weeks ago, scientists announced a controversial plan to create synthetic human genomes from scratch. The paper — which they published following reports about a private, off-the-record meeting — outlined an ambitious plan to build human genomes with various, medically relevant properties, like ones that are immune to cancer. But the overall description of the project, called HGP-write, was vague, leaving many with questions about the project’s aims. Chief among them: would the project make it possible to patent a human genome for the first time? And are the scientists involved in the project contemplating this?

A patent on the genetic blueprint for a human being

The short answers to both those questions are “probably” and “yes, they definitely are.” But the longer version — the one that involves a Supreme Court case — is worth paying attention to as well. If the project is successful, it won’t just affect how genetics research is conducted, or how scientists look at humans and their health. It would mean also that the world could end up with a patent on the genetic blueprint for a human being.

For many researchers, that’s a distressing thought. Patents aren’t necessarily bad for science, but in at least one instance, patents on two human genes held by Myriad Genetics, a molecular diagnostics company, impeded research and made testing for an important cause of illness impossible outside of the company’s own test. Both genes have been linked to breast cancer, and the patents meant that Myriad was the only company that could perform genetic test to determine if a woman is at a higher risk for the disease. So, a challenge filed by the Association for Molecular Pathology sought to change that. Its main argument? Human genes aren’t patentable.

The Supreme Court issued its opinion in June 2013 — and it was unanimous. Myriad’s patents were invalid. But in a strange twist, that ruling is now also one of the main reasons that patenting a synthetic human genome might be possible.

To file or not to file?

Two of the prominent scientists involved in the project said patents were a possibility. “I think that if you made a virus-resistant mammalian cell line that could be used for manufacturing orphan drugs, and so forth, that would make a lot of sense to patent that,” George Church, a geneticist at Harvard University who’s tied to the project, told The Verge. Jef Boeke, a geneticist at New York University, confirmed that the subject has come up within the group, but he was more measured in his response. “We’ve certainly talked about the general topic, but we haven’t made any decisions on it as a group,” he said.

“We’ve certainly talked about the general topic”

Much of the patent discussion will take place later — a synthetic genome could take years to accomplish — and it’ll depend on who funds various portions of the project, Boeke says. The private company Autodesk has already committed $250,000, but researchers hope to gather $100 million in pledged support from public, private, and academic sources within the year. So if the money comes from public sources, it’s possible that at least some of the researchers will try to avoid patenting their inventions. “If we can convince government agencies to publicly fund the project, I would certainly push for a no-patent policy on the cell line and the DNA sequence, but I can’t guarantee that I’ll carry the day,” Boeke told The Verge.

There’s a big difference between filing a patent and actually winning a claim, however. So, we asked a few experts to tell us if they thought a claim on a synthetic human genome would pass muster. In the end, they all told us pretty much the same thing: to understand how this might go down, understanding the Myriad case is key. That’s because when the Supreme Court made its decision, it drew a line between two different types of DNA. The first kind is isolated DNA that does the same job you’d see it do in a person; it doesn’t qualify as “patentable subject matter.” The second kind, though — synthetic DNA that’s markedly different from what you’d find in nature — is something you can legally patent. And that’s the bit that lawyers say matters for HGP-write. Under that rule, a synthetic human genome like the one Church described — one that resists all viruses and pathogens — would probably eligible for patenting, too.

“That likely could be eligible for patenting”

“If we read that decision onto Church’s plans, at least as we understand them, then that would say a synthetic genome — in fact any segment of synthetic DNA — is patentable subject matter,” says John Conley, a law professor at the University of North Carolina and a lawyer for Robinson Bradshaw, a firm that assisted Church in getting the Personal Genome Project off the ground a few years ago. Courtenay Brinckerhoff, an intellectual property lawyer at Foley and Lardner who works on life science cases, agrees. “If they’re changing the DNA sequences, then that likely could be eligible for patenting.” And that’s pretty much the argument that Church made on the phone. “You obviously can’t patent things that are natural, but here we are talking about something decidedly unnatural,” he said.

As for a cell line patent, that would likely be doable as well. Scientists already hold patents for cell lines, even human ones, so cells that are produced by HGP-write would probably be eligible. In fact, patenting a cell line instead of the synthetic genome itself might actually be easier to do, in part because the filing is more specific, says Robert Cook-Deegan, a genomics and intellectual property expert at Duke University. “One would guess that [lawyers] would build out from the precedent of many other human cell lines,” he told The Verge.

Eligibility is just the start

There’s a lot more to a patent filing then determining if something’s eligible. To hold a patent, lawyers will also have to show that a cell line or genome is novel and “non-obvious,” rather than a development that just follows the general progression of the field.

And so, making that determination means looking not only at an invention, but also at the field as a whole, Conley says. Recently, the federal circuit, the appellate court below the Supreme Court that hears patent appeals, has been fairly liberal when it comes to designating a life sciences invention as “obvious,” and that could play against HGP-write, he says. But until the group releases more information about what it plans to patent, it’s hard to know for sure how this will play out.

“One of the rules about patent law is that you don’t actually know how to figure it out unless you get down into the nitty gritty details,” Cook-Deegan says. “Whether they obtain the patents will depend very crucially on the decision that the people trying to get the patents make.”

“There will be significant uproar, backlash”

Because of the Myriad case, the mere mention of patents can be uncomfortable for researchers who aren’t involved in HGP-write. “If it’s a product that has such global implications, there will be significant uproar, backlash,” says Charles Rotimi, director of the Center for Research on Genomics and Global Health at the National Institutes of Health. “From a societal point of view, it may be difficult to say, ‘I’m just going to be the roadblock to everyone else.’” Lawrence Brody, director of the Division of Genomics and Society at the NIH, is more open to the idea, but only slightly. A patent could be a positive development for research, because filing one forces scientists to share their methods with others, he says — just “as long as it won’t prevent anyone from doing anything else.”

If Brody and Rotimi’s reactions are any indication, the patent discussions surrounding HGP-write are bound to be controversial. And in many ways, that’s a sign of the project’s potential. Few would worry about this if it there wasn’t at least a slim chance that building a useful synthetic human genome was possible. But until we know more what the researchers are planning there’s little to do but speculate.