One of the things I have never completely been able reconcile as a journalist is how to resolve "the presumption of expertise."   

That is the presumption that if a journalist has written about something then that makes him worthy of giving advice.  

This is particularly true when you write anything related to dire medical conditions, even if you have never come within a million kilometres of going to medical school.  

After you write such a piece, people mentally attach a doctor-esque diploma to your name. Even more troubling, sometimes so do you.  

What this can lead to are the kinds of ethical dilemmas that even ethicists don't have easy answers to. Consider the following.  

In the last little while, I have written about gene screening tests for those who are prone to sudden heart attacks.  

The screening allows family members to find out if they, too, carry the lethal mutation.  

If they don't, they can stop worrying. If they do, they can often have a defibrillator implanted to restart an unexpectedly failing heart.  

This and certain drugs have dramatically cut death rates when given to otherwise symptom-less people who carry the mutations. But as I discovered, not everyone wants to know about these situations or, when told, take action.

Personalized medicine

As is my gossipy wont when I come upon a new discovery, I almost compulsively start chatting about it with friends and neighbours.


Washington's Kayla Burt leaps to defend UCLA's Lisa Willis in the first half of a college basketball game in January 2006 in Seattle. Burt, who has Long QT Syndrome, left the game in the first half after her defibrillator went off. Three years earlier, her heart stopped and she had to be revived by her teammates. In this case, she was fine but she ended up leaving the team because of concerns involving her heart and ultra-competitive sport. (Elaine Thompson/Associated Press)


That is how, one summery day, I found myself telling a friend about a heart condition called Long QT Syndrome and how there are three different genes that can cause it and that are triggered by different phenomena.

If you carry one LQTS mutation, then strenuous exercise can cause the heart to fail. If you carry a second, the attacks are brought on by loud noises such as an alarm clock. The third kind is triggered by depression or sometimes even sleep.  

From the standpoint of personalized genetic medicine, this kind of knowledge stands us on the threshold of individualized treatment for specific conditions and diseases.  

But my friend didn't ooh or ahh, she just nodded and said, "I have LQTS  and my sister has just been tested and she carries the gene, too."  

Even more worrisome, another of her sisters had suddenly dropped dead of a  heart attack in her 40s, as had her father.

'I'm not being tested'

When she told me this, I immediately responded with a presumption of expertise: Your children have to be genetically tested to see if they carry the mutation, I said emphatically, and your sister's children and your brother and his family as well.  

Yes, my friend said, she and her sister were looking into having their children tested. But her brother was another story.  

Sensing there was some family tension here, I offered to contact the brother and lay out the need for him to be tested.

The Mayo Clinic: Long QT Syndrome 

BBC: Long QT Syndrome, what is it? 

He knows me as a science writer, so the information and advice would appear to come from a neutral source. From a presumably expert source.  

I forwarded her a background paper on LQTS and suggested she send it to her siblings.

A few days later, I asked her what happened and she said that she had received a positive response from her sister, but that her brother had effectively shrugged.  

"I'm not going in for a test. I know I don't have it," he told her.  

That dismissive response shocked me even though I had heard similar accounts from geneticists of "it can't be me" reactions. 

However, after I walked away I began to obsess about what the presumption of expertise demanded of me. What should I, the non-doctor, the simple writer of things he has learned, do?

Duty to warn?

The problem with the brother's decision, as I saw it, was that, if he was wrong, it didn't only affect him but his kids as well. They are the fruits of a potentially poisoned genetic well.

How could he not see himself, as nature did, as a vessel through which genes, good and bad, reconfigured themselves into the forms of his unknowing and unsuspecting offspring.

I began to wonder if I should be the one to tell his immediate family somehow if he wasn't going to.

Feeling hugely conflicted, I went to see if there was truly expert guidance in this area and soon learned that what is called the "duty to warn" is a dilemma of increasing importance in the medical community as genetic testing creates the situation where the patient is not just an individual but part of a potentially infected family.  

What has begun to motivate the professionals to act, it seems, is fear of the law: Will they be subject to a malpractice suit if they don't tell children and relatives about the possibility of them carrying a potentially fatal gene?

The related question, of course, is whether they even have the right to pass on genetic information to people who are not their patients, especially in the case of minors.

These are genuine issues but not ones that relate to a journalist who simply wrote an article about a condition.

Part of my brain said write or call the brother and tell him he has to be tested, or at the very least has to have his children tested.

Another part of my brain said ignore him, he's lost in denial. But then the question arose: Should I contact the children's mother, or the kids themselves, or maybe even some child welfare agency?

Then a very different voice said this is not the responsibility of a mere writer, who simply had researched and written about LQTS and who will almost immediately go on to research and write about something completely different next week.

If there is a duty to warn, I have warned through the writing. People have a right to make their own decisions about tests they want to have done on them.

Parents have a right to decide what they think is best for their children, especially when there is a 50/50 chance the gene mutation has not been passed on and all my fears are unfounded.

Then I spoke with Kathy Hodgkinson, a bio-ethicist at Memorial University in St. John's.  

"Not speaking as a professional, but as me personally, I have always found it better for me to speak up in cases in which it is important to speak up," she said. "It made me feel better that the burden of actually knowing something was actually shared."

That sounded right: In a confused ethical landscape, do whatever feels right to you.  

But then I wobbled again. I felt for the children but I also feared for the family dynamic if my interference should cause things to explode.

I feared that I was just some busybody nobody, just a writer who read up on something and then applied a presumption of expertise to himself.

I felt and I feared, but I still didn't know what to do. I still don't.