Non-Invasive Prenatal Testing

Chromosomally derived anomalies have been with us for millenia –maintaining structural and functional integrity is obviously difficult when you think about it. We humans have 46 chromosomes that must continually divide and reproduce unerring copies of themselves as they issue unique and contextual instructions for cell development or maintenance.

The functional components of chromosomes are called genes and we have around 20,000-30,000 of them, each one built from smaller base pairs like words in a sentence. And depending on the chromosome, each strand of DNA has well over a hundred million base pairs to supervise. It doesn’t take too much imagination to realize that rearranging words in such a sentence, or letters in each word, can alter its meaning. Jumble its information – or even destroy its function…

Throughout recorded history, there has been a recognition that some individuals lacked the same intellectual or emotional attributes as the rest of the community, and yet these people still had a role in the society. They were tolerated and often cherished members of the group and contributed to the weft and warp of the social fabric. Every town had its Village Idiot, to use the ancient (and non-revisionist) term; every village had its special people…

It would seem we live in different times, however, and social values have shifted; there is an expectation of normalcy, if not perfection, in our offspring. The current thrust is early –prenatal– diagnosis of suspected anomalies so that the expectant parents can choose whether the issue lies within their comfort and capability zones.

Prenatal testing has undergone many sea-changes over the years as technology and attitudes have goaded each other. Early tests sought to detect only the most frequent genetic anomaly: Down syndrome –or trisomy 21. As time and ability progressed, more genetic abnormalities have received similar surveillance.

But accuracy of prediction has come under scrutiny of late. It is no longer acceptable merely to arouse suspicion of an abnormality. False positives (thinking the anomaly is present when it is not) and false negatives (not detecting the anomaly) each have their own consequences. Risk of error, in other words, needed to be minimized if decisions were to be reliably dependent on the results.

In Canada, there are currently three (and now four –the subject of this essay) options for prenatal screening of genetic abnormalities –still largely for trisomy 21 because it is by far the largest component of the pool of abnormalities:

  • First trimester screening –done between 11 and 14 weeks gestational age with a detection rate of 87-90% and a false +ve rate of 5%
  • Integrated prenatal screening– consisting of two parts: the first one the same as with first trimester screening and the second between 15 and 20 weeks gestational age. This has a detection rate of 87%-95% and a false +ve rate of 2 to 5%
  • Quad screening– done between 15-20 weeks but with a detection rate of only 81% and a false +ve rate of between 5 and 7%

These results are pretty good and statistically acceptable –unless, that is, a mother has to make an irrevocable decision based on them. There was a need for even more accuracy –less risk- and so technology again rose to the challenge: the Non-Invasive Prenatal Test (NIPT). This is a blood test taken from the mother that measures her baby’s DNA that is floating free in the part of her blood called plasma. It is being continually released into the maternal circulation (with a half-life of around 16 minutes), so it’s an up to date survey of the foetus. There is maternal DNA there though, and the fetal fraction of it is usually about 10% so, to be sure the result is representative, the fetal fraction measured has to be at least 4%… Confused? Well, just remember that it is most reliably measured after 10 weeks gestation and with no upper limit of gestational age; that it has a detection rate of over 98% and a false +ve rate of less than 0.3% (I’ve taken these figures from the June 2014 edition of JOGC).

There are some caveats, of course –there always are- and seemingly a variety of iterations of what can be measured. But by and large it seems close to ideal: high accuracy with minimal if any risk to mother or baby. It is still recommended that a result indicating a chromosomal anomaly be confirmed with an amniocentesis (taking a sample of fluid from around the baby in the uterus) for confirmation, however.

So why don’t we fully embrace NIPT and relegate the other tests to history –tests that were helpful in their time, but indirectly naïve on sober reflection? Well, apart from the current high cost which might preclude its equal availability to all strata of society, there are other ethical considerations. And although these same considerations obtain with any prenatal genetic test, with NIPT these are largely attributable to its accuracy; one could foresee a time when the recommendation for a corroborative amniocentesis to obviate any risk of false positivity might be rescinded, further decreasing the time available for thoughtful and reflective parental decision-making.

Autonomy is the right of an individual to make informed choices for herself. But the key word here is ‘informed’. This implies that the information that informs her is both relevant and appropriate information. And yet, by necessity, it is provided and constructed by others; it is drawn from social and political contexts that she may not share and the options it provides may reflect this. Relational autonomy is an ethical theory that considers the ramifications of those choices that are made available to her. More traditional views have tended to treat the person making decisions as an isolated unit; but in fact, she is embedded in her own -perhaps differing- culture that influences both the context and the situation in which she has to make her decision.

We do not all react the same to identical information, nor is the ability to make an informed choice simply a function of the amount of information available. Women and doctors have different data priorities. Even different message priorities. We all need time to sift through the context; we need time for processing our feelings. Our needs. Our connection to the simmering culture in which we swim.

And then there is the issue of what we want NIPT to detect. Access to fetal DNA offers boundless opportunities in the future for singling out other aspects of the chromosomes we wish to interrogate –whether with serious concerns: hereditary conditions like cystic fibrosis, for example, or with more broad-based anxieties such as concern about random mutations

Other, more frivolous concerns such as sex selection or, in the forseeable future, even searches for –and hence management of- certain genetic traits, present a growing tension between individual autonomy and societal values. For that matter, even detection of the trisomies has engendered much controversy, let alone the prospect of finding and perhaps eliminating other abnormalities not shared by the majority. What is the expectation –perceived or otherwise- after an ‘abnormal’ test? And what is abnormal? What should we accept?

I suppose, ultimately, it is for each of us to decide. Of course Shakespeare offered his opinion long ago: Love looks not with the eyes, but with the mind. But are we still that wise? Or have time and circumstance changed that as well?

A Placental Tale

Her light brown hair was long and tied in a little pile on the top of her head like a haystack about to topple. Her cheeks were rosy, her eyes were bright, and her face was lit with the jubilation that only the young experience at the start of a journey. She was happy –her whole body trembled with the joy of a recently discovered pregnancy. Her smile was so infectious and irresistable that my mood changed the moment I saw her in the waiting room. It’s one of the many benefits of my profession –like a gratuity, almost- to experience her exhilaration vicariously.

She could hardly sit in the chair in my office she was so excited. I congratulated her on her first pregnancy and after taking her history and filling in the antenatal forms, sat back in my chair to chat less formally. It’s an opportunity for both of us to get to know each other, and for her to ask me questions: management questions, fear questions, rumour questions… Even silly questions she would have been afraid to ask at the beginning. “You know,” she started hesitantly, but obviously more comfortable talking to me, “You know, when I first thought about it, I really assumed we’d strayed too far from our roots…”

I smiled encouragingly. “What do you mean?”

She stared at the ceiling for a moment before continuing. “I mean, nothing’s natural anymore.” She let her eyes fall on my face for an instant to check my reaction before letting them wander again. “Pregnancy’s sort of, you know, compartmentalized .”

An interesting observation. I hadn’t thought about pregnancy in compartments before. But I didn’t say anything; I didn’t want to break into her stream of thoughts.

“You know… First there’s the Missed Period stage and then the Discovery stage…the Nausea stage, then the Feel Better for a while part, the Big and Clumsy part…  And each part is framed by some test or other.”

“You’ve been reading, Marilyn…”

She shrugged noncommittally and sighed. “But you know, I’ve come to like the idea of compartments. It’s a more interesting and useful way of dividing up pregnancy… I mean, rather than into the more traditional trimesters.”

“I think that doctors tend to medicalize things too much; it’s an unfortunate byproduct of our profession.”

She smiled, but warily. She was testing the waters. “I’ve been thinking about documenting the stages online. You know: feelings, physical symptoms, test results –that kind of thing.”

I nodded encouragingly.

“I thought I’d try a video blog…” She let her eyes sit firmly on mine and left them there. “I might see how it goes and then edit them all into a short documentary for YouTube.” She searched my face for a reaction.

My expression obviously suggested I was digesting the idea, but I suspect she saw some suspicion of the whole process, because her smile widened to engulf her face. Her enthusiasm was captivating.

“No, I don’t want to film all our visits, or anything…” She hesitated and then her eyes twinkled mischievously. “Just some of them. It’d be too boring and time-consuming to do them all.”

I am usually up for adventuresome projects, but I admit I couldn’t keep the doubt off my face. The question of privacy, and physician/patient confidentiality ran through my mind, to say nothing of the medico-legal implications. “Well, I…”

She giggled and her whole body seemed to relish the sound. “Just testing,” she said, almost shaking with her delightful laughter. “We’ll just do one visit; you can choose…” She stared at me with a merry expression. Then a change: not more serious perhaps, but more cautious. Uncertain.

“Actually, this has all been done before,” she said with a sigh. “So there has to be a point to my documentary -a twist: a different view of the process of pregnancy and delivery…” She looked down at her lap for a moment, as if summoning the courage to explain. “I’ve always been fascinated with the idea of the placenta as an intermediary. A facilitator. A gatekeeper. I want to document the pregnancy from the placenta’s point of view… You know -give it a name, sort of. Time on the pedestal…” She made eye contact briefly then withdrew her eyes for a moment. “Does that sound crazy?” She shrugged her shoulders and then studied my reaction hopefully.

“That sounds absolutely fascinating!” I said, honestly enthusiastic. “The placenta is something that has always interested me as well. It’s an active and important organ, not just a passive filter.”

“Exactly,” she said as her face lit up. “I’d like to film parts of the labour and delivery for the documentary if that’s okay with you… Especially the  Delivery.”

I cocked my head and looked at her. “The Delivery? I don’t…”

She shook her head in mock exasperation. “The placental delivery! And ,” –she really emphasized the ‘and’- “I’d like to keep the placenta as well. Will they let me?”

I nodded. “And” –I thought I’d try my own emphasis- “you get to keep the baby, too.”

She chuckled and her face pixied. “Oh yeah. I forgot about the baby…” She looked at me mischievously. “What about the filming?

I looked at her for a moment, wondering how to respond. “Well, if it’s okay with the staff in the room. You’d have to get their permission… And don’t forget we’re on a call schedule, so it might not be me who’s there for the delivery… But we’re a pretty liberal group. I’ll bet they’ll be as fascinated as me.”

Her smile never waivered, but her eyes did roll upwards a bit when she shook her head as if she were confronted with a particularly slow student. “I know all that, doctor. Don’t you think I’ve looked up you and your colleagues online already?”

                                                   *

The days, as usual, unfurled thickly but rapidly after that, and the quotidian details, written so densely on each hour, meant that I inevitably forgot about Marilyn’s plan. Even when she returned with her partner for the scheduled antepartum visits they blended into the background of a crowded waiting room and the endless round of weights, blood pressure measurements and fetal heart rate checks that fill each day to overflowing: Samsara.

I don’t mean to suggest that I forgot Marilyn; she was just too enthusiastic and happy to overlook. But I did forget about her video blog. I did forget about her placenta.

I did not forget about her compartments, though –she wouldn’t let me. And one day, during the Big and Clumsy division, she arrived with a little video camera and asked if her partner could film the visit. I glanced at her otherwise unremarkable chart, saw how completely normal her pregnancy had been up until then and shrugged. Why not?

He filmed her getting weighed, and even her sample of urine being tested with the little dipsticks we use to measure protein and sugar. A little embarrassed smile ran briefly across his face when her back was turned and he saw me peeking around the corner at the production. I didn’t mean to stare, but I have to admit I was curious.

The problem began when I measured her abdomen to gauge the size of the baby –all captured on the camera, of course- and I had to explain to them why it didn’t seem to have increased in length from the last visit. There can be many reasons the measurement can vary from expectations, actually: position of baby for one, and minor discrepancies with measuring technique from visit to visit for another. Of course we always worry about a decreasing amount of fluid around the baby or lagging foetal growth, but common things are commonest, as the saying goes. If the change is small, it usually merits only observation at first. If it persists over time, it shouldn’t be ignored, though. Wouldn’t be ignored… Investigations then would become necessary.

I explained this to them in as reassuring fashion as I could, ever mindful that I was doing so on camera. But even so, the questions poured out as I knew they would. It was a small difference, I explained, but they were so anxious I felt I needed to begin an investigation rather than waiting to see if the changes represented a trend, or mistaken measurements. At their insistence, I ordered an ultrasound to check the amniotic fluid around the baby as well as parameters of baby’s growth and well being. But I could see they were still worried –her especially.

“Do you have any other questions?” I asked, trying to keep the smile on my face.

“Do you think it might be the fluid around the baby?” she said, her smile weakening considerably.

“It’s a possibility, I suppose,” I said, trying to stay neutral. “But I really think it’s just baby’s position…”

She strengthened her smile, but I could see it was an effort and she hesitated at the door. “The fluid is the responsibility of the placenta, isn’t it?”

I nodded carefully. The placenta plays a roll in amniotic fluid production, but the whole process is complex and interrelated with multiple other contributing factors. And yet her pregnancy had been, and continued to be otherwise unremarkable. She was only a week or two away from her due date so even if there were problems developing, induction of labour was not out of the question…

She shrugged –also carefully, I thought- and left the examination room holding her partner’s hand.

The ultrasound was normal of course –normal fluid, normal growth of baby… all parameters were normal. I’d also sent her for an NST (Non Stress Test) –a form of monitoring for the baby that correlates its heart rate with various things such as movement, contractions, etc.- and it, too, was normal.

She came to the office the day after the tests without the camera. Her smile was back, and she wore her enthusiasm like a brightly coloured blouse.

“Where’s the camera?” I asked in mock surprise. I hoped she hadn’t been so frightened by the tests that it had discouraged her video blog.

Each time I see her, I am amazed that she can extend the width of her already face-swallowing smile when asked a question. “I’ve decided to shift the focus” –she rolled her eyes at her unintended pun- “and concentrate on the compartments…” I must have looked puzzled, because she explained immediately. “Some things are just meant to stay in the background,” she said. “Important, yet anonymous.”

I didn’t pursue the reasons. I suppose some things –background things- feel more comfortable in the shadows and away from public scrutiny.

As luck would have it, I was not on call for the delivery. And because it occurred over a weekend, she was not even in the hospital when I returned on the following Monday. I only saw her several weeks later for her post partum check.

She was the same ebullient woman, though; nothing could dampen her enthusiam –not even the crying infant she was snuggling as she came into the office. Everything had apparently gone well and she had no complaints or problems. But I just had to ask. “Did you manage to video the delivery?” I said with a smile. She nodded excitedly, obviously pleased that I had remembered. “And the Delivery..?”

She looked puzzled and her forehead furrowed, but only briefly. “Oh, the placental delivery, you mean?” She immediately shook her head and her unstoppable eyes twinkled yet again. “It’s so…disgusting,” she said after searching for the best word. “And once it came out, they put it in a little bowl somewhere in the background and I guess we forgot about it… We didn’t even name it.”

Pelvic Exams

Medicine has been my life, and over the years I have seen my specialty of obstetrics and gynaecology break free of many of the traditions that shackled it to the past. Obstetrics was once a superstition-clad field -a world unto itself; gynaecology was mired in taboo and cultural sensitivities that often precluded open-minded and unbiased research and therapy.

To a variable extent, both managed to disentangle themselves from the constraining mesh of gendered folklore and even sexual politics by embracing a non-discriminatory and objective multidisciplinary approach to the problems surrounding each domain: what a pregnant woman had in common with her non-pregnant counterpart, for example. A recognition that gestational diabetes, say, could be engendered by the stresses of pregnancy and that its diagnosis and management had much in common with type 2 diabetes in both sexes. That not only did conditions -diseases, anomalies, medical and surgical abnormalities- have an effect on pregnancy, but that pregnancy had an effect on them as well. Treatment had to be contextualized. Tailored.

An awareness that one of the most common and devastating cancers of women had preliminary and treatable forms that could be detected by scraping the surface cells of the uterine cervix led to the development by Papanicolau of his eponymous pap smear in the early part of the last century. This mainstay of Women’s Health required some education, of course: although readily accessible physically, the cervix occupied an understandably personal and intimate region hitherto guarded by powerful societal norms -not to mention feminine propriety.

And yet, despite the obvious progress and benefits accruing to this approach, there remain other elements equally important to success. To ignore these, is to forget that there is more to personhood than meets the eye. We are more than the sum total of our parts.

I can’t help but feel that Medicine has sometimes capitulated to the Scientific Method -surrendered its mandate. Forgotten its purpose: to help and reassure. Even my own specialty, despite its undeniable progress, occasionally mistakes a valuable stand of trees for a forest and seems to be in a hurry to log them all to ground level -to the bottom, if you’ll pardon the mixed metaphor- in its haste to discover what might be hidden. There are tides of change that buffet us all, but are they sweeping baby, bathwater and flotsam out to some nebulous Sargasso place beyond the horizon? A place unreachable by the rest of us. Unusable. Unauditable. In our dash to embrace what has been called evidence-based care, have we thrown reality-based care overboard to lighten the load? The bureaucratic equivalent of jetsam: cargo thrown overboard to save the ship -a word derived from jettison.

We must be sensitive to changing times and evidence, of course; new data require new approaches. We must be aware of public opinion and evolving mores because sensibilities wander, expectations mutate. We are not the same people we were even a decade ago. We are an ever-simmering melange as new customs merge with established ones, and religions stir several pots at once.

So there is no one center around which things revolve; we are many circles, each overlapping. We are a stochastic society: a kaleidoscopic stew of boiling colours and tastes.

But just because there are many variables that resist easy classification, this does not necessitate ill-considered solutions. Some things in Medicine are important -worth preserving even if they require more work than in the past. More patience. More understanding.

Think, for example, of vaccinations. Who would have thought there would be any resistance to these life-saving measures a generation ago when polio, smallpox, diphtheria, tetanus –even measles- were reeking havoc across the world? Nowadays it’s not the doctors who are suspicious, but the public: ‘Why vaccinate my child and subject her to risks of side effects for something that nobody gets anymore?’

I hear this occasionally from my pregnant patients. So, I have to make the time to counsel them and attempt to answer their pre-printed Google inquiries. And by and large they understand. What they have been seeking is not so much a detailed data-ridden explication with appended references, but an empathetic hearing and discussion of their concerns. People are sensible, by and large. They simply want what’s best for themselves and their families. They want to be participants in health related issues –and why not?

But to come to the point of this essay: http://annals.org/article.aspx?articleid=1884537

Some patients have readily discoverable problems -an enlarging mole on their skin that worries them, say. But some areas are hidden –both from the world and the person herself. The vagina was not designed as a shop window, and what hides at its end in the pelvis –like the uterus, ovaries, Fallopian tubes, for example- are not subject to casual interrogation. Tests like ultrasounds or CT scans are only done when symptoms arise –and like everything else, that is often too late. This is a worry.

Most women are resigned to interval pap smears (and soon, no doubt, to interval HPV testing from the same area). It seems to be accepted by most people in the community that pap smears can detect abnormal cells arising on the surface of the cervix long before –years before- any noticeable symptoms appear. And the fact that the rest of the pelvis can be assessed at the same time as the pap smear is reassuring to most women. Expected, actually -especially since their doctor is already focussed on the area. In the neighbourhood, as it were.

So it came as a surprise to me that a recent guideline from the American College of Physicians suggested that a pelvic exam should not be done routinely with pap smears. Only if symptoms arise that are suggestive of pelvic pathology could one justify its performance… Where’s the reassurance in that?

http://www.2minutemedicine.com/new-acp-guidelines-recommend-against-regular-pelvic-exams/

There are harms associated with it apparently. Evaluated harms ‘included fear, anxiety, embarrassment, pain, and discomfort. Physical harms may include urinary tract infections, and symptoms such as dysuria, and frequent urination.’ Wow! I wonder who is doing the pelvic exams for their studies.

And I wonder if any of the examiners actually discussed the examination with the patient beforehand. Or, more importantly, asked her permission. Her arrival at the office for the pap smear was voluntary (one hopes) and so she must be an active and willing participant in any medical investigations performed on her –including a pelvic examination, obviously. If possible, she should be able to choose her examiner –a female doctor, for example, or someone she trusts and with whom she feels at ease. As for my part, if she should choose not to be examined at the time of the pap, I certainly do not object; but I always ask.

Sometimes, there are cultural differences where the patient would feel awkward being examined by a male and if I suspect that is the case, I do not insist or make her feel uncomfortable about having to make a choice. I also offer to have another woman (her friend, my secretary, or her husband if she so chooses) to be present in the examination room.

Examination is as much for her reassurance as to discover something. The choice is hers, not mine. But there is usually an expectation that it will be done –or at least offered. I don’t think that we should make a big production about it. I don’t enjoy going to the dentist –childhood memories of pain and discomfort, I suppose- but when I do go, I expect her to check more in my mouth than just my teeth. Even if it is just my regular dental checkup I am willing to have my tongue palpated and my gums poked and prodded… especially if it is just a check up. I want to prevent problems as well as solve them. And the more thorough the examination, the more reassured I feel when it is normal. Am I alone in this?

Let’s face it, there are some things that, like it or not, we need to do for our own benefit. In the long march of Time, they might not amount to much, but nonetheless we may put them off in anticipation of discomfort or embarrassment. Autonomy –choice- is paramount.

But let me paraphrase (para-sex) Shakespeare:

She that outlives this day, and comes safe home,                                                                         

Will stand a’ tiptoe when this day is named.

Kind of makes one proud to have participated, don’t you think..?

The Justice of Justice

Okay, I’m Canadian; I do not understand the objection to universal health care south of the border. And I certainly don’t know how a society that purports to believe in equal opportunity for all could be so resistant to accepting the inalienable right of every person to access affordable medical treatment, the right to a personal choice as to whether or not to become -or stay- pregnant; and, so long as it does no harm to anyone else, the right to make a decision about what to do with their own bodies. Isn’t that part of the Life, Liberty and pursuit of Happiness in the U.S. Declaration of Independence?

Each person has the right to choose a path for herself. That does not mean that others have to make the same choice –or even agree with it. But they should respect the right to do so. Live and let live; not judge and punish. Life –society- is far too complex; there are too many interactions, too many competing values (each one held and defended by someone) – too much going on for there to be just one direction, just one answer that is forever correct no matter the circumstances.

We all have ideas that we embrace and cherish. Often, one of the hardest things to do is read contrary opinions; we –most of at any rate- are subject to a confirmation bias. That is we tend to read or watch only those things that confirm our opinions. We do not frequently seek to explore those that contradict. We do not usually parse them to discover if there is a way they might be compatible with our own. If the contrary opinion expressed is about a strongly held belief we certainly do not examine it as closely as we might an article commenting on a foreign war atrocity. And religion seems to inhabit an entirely different Magisterium where compromise is considered a form of moral compromise and is anathema. Unacceptable. Wrong.

For what it’s worth, I think the answer to opposing values does not lie in denying them to the point of anger but rather in examining them to discover why they are held, and what benefits might obtain by considering them. Incorporating them, Compromising with them. In fact, it seems to me that even being willing to assess them is a step in the right direction.

What started me thinking about this was a BBC report of a recent 5-4 decision by the U.S. Supreme Court which “found that some corporations can hold religious objections that exempt them from a legal requirement that companies with 50 or more employees offer a health insurance plan that pays for contraception at no charge to the worker or pay a fine.”

 http://www.bbc.com/news/28093756

One has to assume that the Supreme Court is impartial and that its judgements are delivered only after a dispassionate consideration of all the relevant details of the case in point. The fact that all three female justices disagreed with five of their male colleagues does give one pause for thought, however. Is it a coincidence unrelated to the judgement on what can certainly be seen as a comment on the value of a woman’s rights, a woman’s choice -or something else?

But one has to be careful in evaluating the judgment. It’s not really an issue of increasing the difficulty for a woman to obtain contraception, nor even that it should be paid for by a company. Fortunately there are some foresightful provisions that the White House thought to include that may mitigate the ruling –the BBC once again: As the court noted, the Obama administration has already devised a mechanism under which workers of non-profit organisations that object to the contraception mandate could keep coverage without the organisation having to pay for it.

So then, what’s the big deal about the Supreme Court ruling? Well, The decision marks the first time the Supreme Court has found a profit-seeking business can hold religious views under federal law, analysts say. In other words, it suggests that religious beliefs trump individual rights -women’s rights in this case. And no doubt it is the thin edge of a wedge for further disruptive –not to mention religious- challenges.

In a dissent she read aloud from the bench, Justice Ruth Bader Ginsburg called the decision “potentially sweeping” because it minimizes the government’s interest in uniform compliance with laws affecting the workplace. “And it discounts the disadvantages religion-based opt-outs impose on others, in particular, employees who do not share their employer’s religious beliefs.”

And don’t think this is an attitude peculiar to America; Canada is not exempt:

http://www.calgaryherald.com/health/Calgary+doctor+refuses+prescribe+birth+control+over+moral+beliefs/9978442/story.html

We are all subject to our own biases; it’s just when they interfere with the rights of others that I worry.

The internet has exposed us all to a plethora of competing viewpoints. Of course, if we don’t agree we can just read the first sentence, make a judgment, and then move on to another. Or if we’re so inclined, we could even take the time to comment on it. But those ideas with which we disagree require some examination to refute online or the rebuttal seems fatuous. Ill considered. Unrealistic. And it will have little effect. Some of us don’t care, of course: anonymity is a seductive drug. That’s what cyber-bullying is all about: not changing opinions, merely inflaming them. Freedom to speak -or write- is not really freedom unless it makes sense. Connects in some meaningful way. Justifies… I suspect that most of us would not make the same vapid and vituperative comments if our names were appended and we knew that others were judging us. Or if we could be held accountable in the courts, for that matter.

This time Shakespeare (Coriolanus speaking to a group of mutinous citizens): What’s the matter you dissentious rogues, that, rubbing the poor itch of your opinion, make yourselves scabs? I’m not sure that I’ve entirely escaped a confirmation bias here, of course –I’ll have to examine my position- but I think he’s on to something…

 

 

 

 

 

The Asexual

Well the annual Pride Toronto Festival has come and gone again; we had one here in Vancouver as well, but this year’s Toronto iteration apparently broke all records for attendance, parade, and participation. I have to admit to my own feeling of pride that Society is making such progress in accepting –even welcoming- diversity. Especially, it would seem, in Canada.

The LGBTQ (have I got those initials in the right order?) community has done a wonderful job of publicizing and integrating their orientations in the public’s mind. Gay marriage –an unthinkable concept only a few years ago- is now accepted in most areas with barely a glance. That a loving couple should be able to legally dedicate their lives to each other with all the rights normally accorded to a marriage seems now so obvious and compelling that it is hard for many of us to countenance a time when it was restricted to heterosexuals.

But the orientation diversity has not run its course; there are other voices finally audible now that the din of battle has dimmed somewhat –voices that I, at least, had not heard before. Readers of this blog may recall my essay on Gender in January 2013, when I had to admit to an age-dependent naïveté concerning gendered public washrooms –you know, designating separate rooms for male and female toilets. I had always thought of the arrangement as being eminently sensible until disavowed of this by a patient, indignant that she had to accept the arbitrary (she felt) assignation of the female room by the accident of her (unchosen) chromosomal array. So I felt that I had witnessed the final frontier of the orientation choices: none. No-name toilets for the sexually unassigned.

I was wrong –again. My innocence was dragged to the surface once more when I heard a CBC radio interview with a woman who was feeling unaccepted even by the LGBTQ group because she identified herself as asexual –i.e. none of the above. Well, to consider oneself as a non-participant is fair enough I suppose, but the absence of something really doesn’t give one much to identify with I would have thought. How ignorant of me; how unsophisticated! I mean there was an unfilled niche there just begging for attention… And there is a growing community of asexuals, some of whom apparently marched in this year’s Toronto Pride Festival parade.

But I suppose I shouldn’t have been surprised. As with most issues, I am often exposed to them first in my office. And under those circumstances, they don’t seem odd or aberrant –just interesting.

Thinking about it now, I suppose I was first introduced to asexuality several years ago -during an investigation of infertility of all things.

There are many causes of infertility. Some are complicated and require referral to a specialized infertility clinic for more intensive investigation and treatment. Others are less onerous, less worrisome and after taking a thorough history and doing a detailed physical exam need only a few simple investigations followed by a large dollop of patience and reassurance. Needless to say, it is this latter group that I prefer, if only because I feel that dialogue is still useful; I get a chance to show that listening, interacting and empathizing is part of Medicine.

Of course, sometimes the reasons for infertility seem blindingly obvious -like the frequency of intercourse. Infrequency, I mean…

“Oh, we don’t have sex very often, doctor,” the sweat shirt and blue jean clad woman said almost proudly. And when one of my eyebrows crept up involuntarily –I try to stay neutral, but sometimes I am weak- she scowled and explained that she didn’t really like sex. “It’s not who I am,” she added, staring at me defiantly. “Once a month is plenty…”

I intended to follow up with a question about whether or not she found the act painful, or whether there might be some impediment to her enjoyment of sex but I felt the mood change in the room. Or at least the mood on her face changed.

I thought maybe I should play the ‘please clarify’ card rather than the ‘I don’t understand’ one which seems to annoy people nowadays. I pretended to read from the notes I had just written. “You say you are only sexually active once a month…?”

“Only when I’m ovulating.” She interrupted before I could finish the question. “That’s when the best chance to conceive exists,” she continued, as if perhaps this was a thought about fertility that hadn’t occurred to me.

I nodded in agreement, but my expression must have remained puzzled because she sighed and sat back in her seat as if exasperated. “Not everybody enjoys sex, you know. For some of us it is simply a means to an end: a baby.” She continued to stare at me –defying me to disagree. “I don’t enjoy washing dishes either, but if I want to have dinner…” she added somewhat cryptically.

I put my pen down on the chart and decided to sit back in my seat as well.  “Well, so far everything seems completely normal,” I said helpfully, hoping to diffuse the tension. I was trying to reassure her that she would likely be able to conceive –but with such infrequent exposure to sperm, might have to be patient or change her frequency. “You may just have to start washing more dishes,” I added carefully. I thought it was a humorous and inoffensive rejoinder to her example. I said it with a smile and with what I hoped was a twinkle in my eye. But to tell you the truth, I couldn’t resist. 

She shot forward in her seat, her eyes narrowed, and I could see her face hardening like concrete. “I had hoped you of all people would understand, doctor!” She said the ‘doctor’ word through clenched teeth.

“I’m sorry…” It slipped through my mouth involuntarily as it often does when I’ve inadvertently crossed some line or other. I actually meant it as a query –as in, ‘Pardon me?’- but when her face relaxed a little from my apparent capitulation I decided to lie fallow. I had no idea what had enraged her, however. Had I been Aspergerially inappropriate and insensitive? Or had she wanted some other more easily acceptable regimen?

She got up from her chair, picked up the little backpack she had worn on arrival and walked to the door. There she hesitated and I could see her tension dissolving. She turned to me and almost whispered, “I’m sorry, too, doctor. It’s just that I’m an Asexual.” She said it as if it were a noun rather than an adjective. And then she left –not angry, not frustrated… More sad that I hadn’t known.

I never saw her again, and I may never understand what she was going through, but I hope things have worked out. I hope she eventually had the child she so desperately wanted and that they went to this Toronto Pride Festival to watch the parade. And I hope that she has at last achieved the recognition and validation of her orientation that she obviously needed. The one that society evidently needs to offer.