Medicine and Ideology

Some things are more definitive than others –less ambiguous, more predictable. Reliable, in other words. They lend themselves to yes-no answers, right-wrong judgements, good-bad characteristics. And some people prefer to see the world in black and white like this. Uncertainty is uncomfortable for them; they crave cognitive closure in the opinion of Arie Kruglanski, a professor of psychology at the University of Maryland.

It would seem that there are times in a life –usually inter regna, times of transition- when this eschewal of indeterminacy is more powerful: adolescence, retirement, divorce, and so on. And at those times, when everything seems unstable and unfamiliar, shelter from the maelstrom under any unmoving roof seems prudent. Rules and unequivocal, unchanging answers are tempting accessories. That something is either right or wrong can be comforting in times of stress.

One problem with this bichromatic need however, is that things are rarely static. They are continually modified by circumstance and context; the questions that need to be asked, and especially their answers, expand and mutate. They evolve over time, in other words. So, for example, that someone is, or is not pregnant, may be unambiguous and beyond dispute. But whether that pregnancy continues or miscarries, is healthy or complicated is not. Things change, are unpredictable, and answers –facts?- obtained at one stage may not obtain later. Life is flux -an ever moving current.

And, of course, context is almost as relevant as substance. Nothing is separate from its surroundings. A pregnant woman, say, is a member of a group –however tenuous- or at the very least, a member of a society. A culture. There are obligations and expectations unique to her milieu that may not be immediately apparent –especially to someone not a member of that group. And these conditions do not often lend themselves to a one-time appraisal, a permanent and unbending judgement, or a right/wrong approach. A rigid doctrine -established on whatever principles- does not always work. In fact it imprisons; it imposes an unchanging view on a constantly unfolding reality. It is dogma.

So it was with some concern that I read an article in the Sept.16/14 Canadian Medical Association Journal –in the news section- entitled ‘US politics and ideology enter exam rooms’. In it was outlined some of the requirements in certain states that seem to impose political or moral ideologies on both patients seeking assistance, and medical staff trying to provide it –an arena that one would expect to be free of bias and coercion.

There are some American states, apparently, that require a woman seeking a pregnancy termination to be shown –not just offered-  a view of the ultrasound of her fetus. In my opinion, this is just cruel –a punishment thinly disguised as help. Disclosure. An admonition clothed in the scarily garish colours of useful information. That there may have been extenuating circumstances –whether personal or social- that led to her decision to terminate would seem to be irrelevant. The choice the woman has to make is a painful one –it is seldom capricious, rarely if ever carelessly taken. That someone should be available to help her with her decision and counsel her before and after if she wishes is a given. But it should not be an impediment.

As the article observes, ‘In such cases, it’s not just the doctor and the patient in the room. In effect, it’s the state government, too.’  This is the not-so-thin edge of a wedge that seeks to modify behaviour –even behaviour condoned in law- by mandating seemingly reasonable adjuncts to the process. ‘What could be wrong with offering to show the woman her fetus on an ultrasound?’ one can almost hear them pontificate mellifluously with fists all the while clenched tightly behind their backs. But the operative word here is ‘offer’. The term suggests choice.  Not coercion. Bullying. Threat.

I recognize that I’ve chosen a contentious issue –pregnancy termination- to illustrate a much more fundamental point: the relational autonomy that should be a cornerstone in our dealings with others. And yet it forms –must form- an essential foundation if we are to reach out to those who, constrained by their own beliefs or cultures –their own experiences- are reluctant to seek our help. It seems to me that it is only humane to enable them -actively encourage them- to access whatever aid we are able to provide. It is not merely magnanimity on our part. Not generosity. Not accommodation. It is empathy; a recognition that despite our differences, we are all struggling. All seeking some path through the chaos of one transition or another. And the cognitive closure need not be punitive. Nor dogmatic.

In fact, it can be instructive. Insightful. As Shakespeare observed, It is not in the stars to hold our destiny, but in ourselves. And we must help others to see this. We must enable them, and so enable ourselves.

Aboriginal Women Deserve a Public Inquiry.

We Canadians have always been proud of ourselves; we are a democratic society ruled by the will of the people. We vote and the majority governs, represents our interests, and crafts the laws accordingly -or does it? We have a say in what happens in our several levels of government –a voice in what is done to us… Unless we are a minority. Then we must depend upon the goodwill of those in power to understand and protect our interests. We must trust that, in their blinkered majority, they will not abuse us. Neglect us. Forget us.

But suppose they do. Suppose they surround themselves with their own advisors and see the world through their own lenses, their own authority, their own priorities? Suppose they don’t even understand that anyone could see things differently..? History, after all, is written by the victors, and culture by the dominant.

A case in point is the growing concern in Canada over a series of  missing and murdered aboriginal women –over 1000 in the past 30 years: http://www.nwac.ca/files/download/NWAC_3D_Toolkit_e_0.pdf

There have been various attempts to address the problems of  our First Nations –from a 1996 Royal Commission on Aboriginal People (http://www.aadnc-aandc.gc.ca/eng/1307458586498/1307458751962 ) which did not address the issue of the missing women, to a Royal Canadian Mounted Police (RCMP) Task Force in 2011 (http://www.rcmp-grc.gc.ca/pubs/mmaw-faapd-eng.pdf ) which apparently did…

But the problem remains and the perception that it is not really being addressed is building. In fairness, though, solutions are not only complex, but also expensive and so excuses are rife and rationalizations abundant. Missing women –murdered women- are crimes, not sociological phenomena, says the Prime Minister. Then why are aboriginal women –only one of several minorities in Canada- over-represented in the list, says the other side? An inquiry will tell us nothing new so we should put the money  into solving the problem instead, says the government. http://www.huffingtonpost.ca/chelsea-vowel/missing-and-murdered-women_b_5729738.html?utm_hp_ref=email_share  The cheque’s in the mail in other words; we’re looking into it -you might get it tomorrow… Maybe.

And on and on it goes –I am reminded of Macbeth’s Tomorrow, and tomorrow, and tomorrow, creeps in this petty pace from day to day, to the last syllable of recorded time…  Authority versus Minority. Civitas versus Communitas

But hold on; I think both sides are missing something: a conversation closes when one side or the other is adamant that only their view is the correct one.  Dialogue is an exchange of ideas on a particular issue whose aim should be to reach a consensus, an amicable settlement agreeable to both sides. Dialogue is communal, discursive at times, but inclusive. It does not stem from authority, nor resort to it especially when all have not been heard.

Autonomy -the right to make an informed choice- is a difficult issue in politics, of course. And because in this context choice usually involves large groups of people, there has to be an accommodation, an appreciation of how any decision might affect the well-being of the rest of the population. It has to be fair, in other words. But more than that, it has to be seen to be fair. And for that to occur, the issue cannot always be resolved by simply resorting to a vote. The majority and its own world-view bias will always win. Some things require discussion. Consensus. Open, accessible and representative input from all affected parties.

A Public Inquiry, by its very nature, invites public participation -a dialogue between those in power and those who aren’t- and a chance for all who are interested to have a say, voice their own opinions. It is healing to be heard –especially for a minority. To discuss things openly and publically often exposes underlying issues that need addressing: poverty, access to services, educational gaps, cultural safety, discrimination… A problem that has been swept under a carpet of denial or ignorance cannot be solved until it is uncovered for all –not just the minority affected- to see and appreciate.

I have discussed relational autonomy in a previous essay. It involves considering information in the cultural context, societal values, and the community needs of the groups involved. It is the expectation of cultural safety that will allow the people to express those needs without fear of ridicule or disdain. And it is what a representative democracy should encourage. Nothing less will do.

It seems to me that we all need to sit around a table somewhere and talk with –not at– each other. Remember Summer Camp when we were kids? As soon as the lights were turned off and the adults had left, we regaled outselves for hours with stories and discussions about what really mattered. Everybody had something to say, and everybody listened. We felt heard; we felt known. And slowly, by the end of the week, no matter our differences and annoying ideosyncrasies, we felt bonded in a community. Although we still remained individuals with different pasts and different futures, and although there were still disagreements we were, at least, no longer strangers. And, if the need arose, we could talk again – and actually listen. Friends can do that.

 

 

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?