Should doctors heed 'do not resuscitate' tattoos?

Here's this week's round-up of eclectic and under-the-radar health and medical science news. If you haven't subscribed yet, you can do that by clicking here.

If you open a gift this season and it turns out to be a do-it-yourself gene editing kit, is it legal? Because it could happen.

CRISPR kits are being offered for sale online. You get everything you need to edit the DNA of a harmless strain of E.coli so that it becomes resistant to an antibacterial substance which would normally kill it. It's basic microbiology — a biotech version of an educational chemistry kit. The price: $159.00 US.

The U.S. Food and Drug Administration (FDA) is clear on one point — if the gene editing kits are used to produce gene therapies for self-administration, that's illegal. On its website, the FDA said it is "concerned about the safety risks involved."

In Canada there are rules about handling human pathogens and regulations governing laboratory safety levels. But it's not clear if there are any laws preventing someone from tinkering with the DNA of harmless organisms in their basement.

Health Canada told CBC News in an email that "regulations in Canada have not been developed specifically for Clustered Regularly Interspaced Short Palindromic Repeats (CRISPR) technology."

"Because the kits use non-pathogenic organisms, the Human Pathogens and Toxins Act (HPTA) does not apply."

The DIY gene editing kit was developed by Josiah Zayner, a scientist and biohacker. His company is selling the kits as part of an effort to push the boundaries of biotechnology.

"The amazing things that biotechnology can bring to the world are more powerful and more of a reason to use it than to be scared of why should people not be able to use it," Josiah Zayner told CBC Radio's Bob McDonald on Quirks & Quarks.

"I think a lot about the ethics," Zayner said, adding that there are already laws protecting against dangerous biohacking. "It takes intent for somebody to try to develop a bacteria and use it to harm people. Intent to harm somebody is illegal in every country."

CRISPR is a novel DNA editing system that makes precision gene modification easier and less expensive than ever before. Scientists are studying ways of using CRISPR to correct human genetic diseases. At the same time, a community of biohackers is promoting the technology at a grassroots level.

Zayner has already experimented on himself, injecting a homemade gene therapy into his forearm. He is trying to modify a gene that would allow his muscles to grow. He told McDonald it was a bit reckless.

"Looking back I think it was a little nuts to be honest." 

So far he hasn't seen any physical change in his forearm.

At Toronto's Lunenfeld-Tanenbaum Research Institute, scientist Daniel Durocher is using CRISPR to study potential disease treatments. He says the kit would not allow anyone to start experimenting with human DNA at home.

"The potential for mischief is there, for sure," he said. "But this kit is completely harmless."

It's been almost 50 years since scientists first began to move DNA between organisms, launching a scientific revolution that has transformed biological science. Today's high school students routinely isolate their own DNA in the classroom.

(It's simple. Spit into a glass, add some dish soap to break open the cells, spin the container so the DNA separates. And then add some alcohol and you can keep it on a shelf for a long time.)

"DNA is very stable," Durocher said. "My daughter has a little bit of her DNA that she keeps in her bedroom but there's nothing really you can do with it."

Should doctors heed 'do not resuscitate' tattoos?

A team of Miami doctors was stumped.

Paramedics brought an unconscious 70-year-old man to Jackson Memorial Hospital's emergency room.

He had a history of chronic obstructive pulmonary disease (COPD), diabetes, and an irregular heartbeat.

Doctors thought he was homeless.

His blood alcohol level was elevated. He had the smell of alcohol on his breath.

They assumed he was drunk.

"They were going to let him sleep it off," said Dr. Greg Holt, a critical care physician at the hospital.

But over the next several hours in the ER, the patient got very sick. His blood pressure was too low, his breathing was erratic, his body was shutting down from septic shock.

"We started examining the patient," Holt told the CBC's Kas Roussy. "You couldn't  miss it."

"It" was emblazoned on the man's chest, in bold black inked letters — a tattoo with the unmistakable words: "DO NOT RESUSCITATE."

Holt said he and his colleagues were shocked and stunned.

The doctors weren't sure what to do next. The patient had no ID and no family.

A hospital staff member was dispatched to try and locate next-of-kin.

In the meantime, they decided not to honour the tattoo and its directive.

"It was really nerve-racking, looking at the tattoo and thinking we're going to resuscitate a man who really thought he needed to tell us he didn't want to. We put a mask on him."

But they didn't do all of the things they would normally do to revive someone, because they'd been thrown into this unusual ethical debate.

Is a tattoo a legal DNR order?

"We really thought this man must be serious about not wanting to be resuscitated, given the tattoo.  But we didn't know. And we didn't know the legal aspects."

That was for the hospital's ethics consultants to figure out. And after reviewing the case, they decided the tattoo was good enough for them.

Holt and his team were advised to honour the patient's wishes.

The patient's ID was eventually located. He'd been living in a nursing home. And much to the relief of Holt, a document with the patient's wish not to be revived was also found.

"That made us feel great," said Holt, who wrote about the experience for the New England Journal of Medicine. "We respected his wishes."

The tattooed patient died that night.

Stem cell hate mail

Hate mail is an occupational hazard for Timothy Caulfield, the outspoken Canada Research Chair in health law and policy at the University of Alberta. So he's accustomed to opening his email and reading personal insults from anti-vaccination groups and alternative medicine practitioners. But this time, the hater was the CEO of a Canadian stem cell clinic.

"It was in the classic hate mail format — start with a personal insult, follow with a conspiracy theory about the role of big pharma, talk about a miracle cure and end with another insult," Caulfield said. "But I was surprised it was a CEO of [a] stem cell clinic here in Canada."

Caulfield studies the proliferation of unproven stem cell treatments in Canada and he has been calling for greater regulatory oversight. He thinks his recent comments in a CBC News story we reported a few weeks ago might have prompted the angry email.

"I think that had something to do with it, that's what the timing certainly says."

Caulfield tweeted the email, after editing out the names, as part of his ongoing efforts to stimulate public discussion about the marketing of unproven stem cell therapies.

Zamboni debunks his own 'liberation therapy'

Italian doctor Paolo Zamboni has disproved his own hypothesis that blocked veins are associated with multiple sclerosis.

Eight years after he first proposed that unblocking neck veins could help MS patients, Zamboni conducted a randomized controlled trial of the procedure and concluded "the treatment cannot be recommended in patients with MS." 

The study was published in JAMA Neurology in November.

"I've never wished I were wrong more fervently. I wanted so badly for this to be a real thing," said Andrea Lupini, who has been living with MS for 30 years. She watched the Zamboni story unfold with a heavy heart, suspecting it was too good to be true.

"There was no, 'Well, I told you so in my heart.' There was nothing but disappointment," said Lupini, a former CBC radio reporter, now a public school teacher in Richmond, B.C. She had a front row seat to the Zamboni saga as it played out, beginning with the first TV news reports.

"I remember watching it and thinking, 'Wow this is really interesting,'" she remembered. "It seemed almost religious. People could barely walk and then they were getting up off the table and walking."

"Being told I could wake up one morning and never walk again, that I could lose my vision permanently, you just want to grasp at any possible straw."

"We'll find the money, if you want to do it," her sister told her. But Lupini decided to wait because the hypothesis didn't make sense to her.

"I know that this is a disease that has to be involving more than just the amount of blood that's going to my brain."

The vein-widening procedure was never approved in Canada. But hundreds of Canadians with MS travelled to other countries, paying thousands of dollars to have their veins widened through a venoplasty procedure. Some patients even had permanent stents put in.

"There was a proselytizing element to this. If someone found out you had MS they wanted to tell you ... that they'd had the treatment and what a difference it had made to them," she said. I felt the pressure of that. But I just kept thinking 'wait and see.'"

Lupini had friends who got the procedure. "I feel sad to say it did not have long-term effects."

Canada invested millions on a series of research programs to test the theory after patient groups demonstrated on Parliament Hill. But one by one the studies revealed there was no relationship between blocked veins and MS.

In March, Dr. Anthony Traboulsee of the University of British Columbia found no improvement in MS patients after a $5.5 million clinical trial tested the procedure against a placebo treatment.

"The Zamboni trial provides independent confirmation of what we also found, that venous blockages do not cause MS, nor impact on day to day disability," said Dr. Traboulsee in an email.

So is this the end of the Zamboni story? Traboulsee says yes. Patients no longer ask him about it.

"It was a bold concept. It was not a waste of time. We have learned more about MS despite the trial being a failure therapeutically," he said.

Lupini said the whole tragic story of the debunked theory is a dramatic reflection of the desperation MS patients feel having few treatment options for a devastating disease.

"This could not have been this big a story if there were not so many people who needed it to be a cure."

Census reveals unhealthy commutes 

Most Canadians are still driving to work — and spending a lot of time stuck in traffic, according to the recently released census.

The average car commute time rose from 25.4 minutes in 2011 to 26.2 minutes in 2016, with the longest commutes being in Toronto (34 minutes), Oshawa, Ont. (33.5 minutes), Barrie, Ont. (30.7 minutes) and Montreal (30 minutes).

The median distance was 7.7 kilometres, and over 850,000 Canadians drive more than an hour to work each way.

It's not just irritating. Being sedentary in traffic for that long could also be unhealthy, according to Dr. Mark Tremblay, director of healthy active living and obesity research at the Children's Hospital of Eastern Ontario (CHEO).

"Any extended sitting is not good for us, especially in a stressful situation [such as driving]," Tremblay told CBC News.

He said that when we sit in our cars for too long, "our metabolic functions become dysfunctional," which can lead to high blood pressure, high blood sugar and increased risk of heart disease.

• INTERACTIVE | Canadian Census 2016
• Canadian workforce is more educated and sitting in traffic longer than ever before: 2016 census

However, Tremblay notes that "time is not the key variable [for health], but the amount of stress during the time."

He said that stress and frustration from being stuck in traffic, along with being alone in our vehicles for extended periods of time, have negative consequences to our "social health" and can exacerbate physical health problems.

Tremblay offers these hints to fight back against the health risks of commuting:

• Substitute active transportation options if possible, such as walking or cycling (only 6.9 per cent of Canadians walk or cycle to work).
• Carpool or take public transit to reduce the number of cars on the road and increase social interactions (currently 12.4 per cent of Canadians take public transportation to work, and 12.1 per cent carpool).
• Stagger start times to avoid heavy traffic and reduce time spent on the road.

If those ideas don't work, Tremblay suggests commuters should try to compensate by "deliberately engineering" physical activity into their lives, such as parking farther away from buildings or taking the stairs.

Thanks for reading! You can email us any time with your thoughts or ideas. And if you like what you read, consider forwarding this to a friend.