Hazel McHaffie

genetic inheritance

Modern medical challenges: What do you think?

I’ve just had another filing morning – yawn, yawn. (For new visitors to my blog, that means tucking an accumulation of snippets and ideas into files on different medical ethical topics which might or might not become novels one day.) So I thought I’d share some of the news items with you and throw out a few thoughts for you to ponder or not as you feel so inclined. I’ve supplied links for extra information if you’re interested. No pressure.

Gender issues

An 8 month old Canadian baby has been issued with a health card that doesn’t specify the child’s gender. Single parent Kori Doty is a non-binary transgender person who wants baby Searyl to decide for *themself how *they wish to be recognised.
(*parent’s chosen pronouns)

Over here, the number of children under 10 being referred to gender identity clinics has quadrupled  in the past five years – figures showed that of the 2,016 referrals for children between the ages of 3 and 18, no less than 165 were under 10. (stats from the Gender Identity Development Service – the NHS’s only such facility)

Two young British men (Hayden Cross and Scott Parker – one 21, one 23) have gone public about putting their gender reassignment on hold until they’ve given birth. Both were born female, both have been living as men for a number of years.

And now there’s talk of transgender women receiving donated wombs. It’s a complicated enough process in biologically female patients, with significant risks to mother and fetus during pregnancy. But those who are born male have other issues to contend with such as an inadequate pelvis for giving birth naturally.

A hotter topic seems to be the growing number of transgender people who are seeking reversals, quoting crippling levels of depression and suicidal thoughts, but this development is being kept very quiet according to Prof Miroslav Djordjevic who runs a clinic in Belgrade. Some specialists fear that money plays a part in this with patients accepted for reassignment as long as they can supply the requisite cheque without adequate psychological evaluation and counselling.

Q. What do you feel about
the move to have non-gender specific loos and forms and facilities?
– a lower age limit for reassignment?
– young people who’ve started to transition wanting to call a halt to have babies while they still can?
those subsequently wanting to reverse the process?
transgender women having a womb transplant and giving birth?

Genes and inheritance

The Chief Medical Officer has advocated DNA gene sequencing for every cancer patient in Britain to prevent misdiagnosis, needless hospital visits and ineffective chemotherapy. Testing can correctly identify not just the actual illness but also specific mutations which play a significant role in the success of treatments. On the face of it it’s a big ask: more than 350,000 people are diagnosed with cancer annually and at the moment each DNA test costs around £600. But centralising the testing would reduce the individual costs and personalising the drugs used should speed up treatment and save the NHS a lot of money.

Charlotte Raven was unaware that there was Huntington’s Disease in her family until her father – newly officially diagnosed himself – told her when she was 36 and already had one child. Now aged 48, she’s had symptoms for 7 years and estimates she has at best 10 years to live. She has two children both of whom have a 50% chance of inheriting the illness.

Q. What do you feel about
– the proposal to gene sequence every cancer patient?
the potential discrimination in favour of cancer patients when other disciplines are seriously strapped for cash?
– having the definitive test for a crippling inherited disease yourself?
– the optimal age to tell a child they have a 50% chance of inheriting a degenerative condition?

Fertility

According to research led by a Hebrew university which tracked over 40,000 men, since 1970s sperm counts have fallen by almost 60%. These findings have been likened to the canary in the coalmine – indicative of changes in society and the environment that are damaging health far beyond fertility. Just what should we be doing about chemical pollution, stress, obesity, tight underpants?

A British-born Sikh couple, Sandeep and Reena Mander, whose parents came to this country from Punjab, have launched legal action against the adoption service in their county, Berkshire, after being refused permission to adopt a white child because of their ‘cultural heritage’. The council have only white babies on their register. This professional couple are in their early thirties and have already undergone 6 years of fertility treatment (privately financed to the tune of c£150,000) unsuccessfully. And they have the backing of their local MP – the prime minister, no less! They have now been cleared to adopt in the USA – another extremely expensive procedure.

The senior council of the Royal College of Obstetricians and Gynaecologists – without balloting its members – has voted by a majority to decriminalise abortion at any stage of a pregnancy on the grounds that it has a responsibility to protect women’s health by ensuring access to key services. It isn’t, however, advocating changing the current 24-week cut off period for abortions; rather it seeks to have the restrictions governed by professional regulations not the criminal law.

Scotland has introduced two new changes this month:  women from Northern Ireland can now get free abortions here, and women are allowed to take the abortion bill at home instead of having to be admitted to a clinical setting. i

Q. What do you feel about
– the implications of falling fertility? Should society be being more proactive in your view?  If so, how?
– i
nfertile couples incurring massive expense trying to have a baby?
adoption agencies discriminating in terms of ethnicity, faith, geography, etc?
the availability and legality of abortion?
– the risks to women of inducing abortions at home?
– medical tourism?

Not to mention all sorts of stories and news and stats on NHS resources, performance targets, shortage of health care professionals … never any shortage of material to fire the grey cells and indignation, and get the creative juices flowing. What if …? Supposing …? Imagine if …

 

PS. I’ve done my best to check various sources but please do post a comment if you have more information that runs counter to the brief synopsis I’ve offered.

 

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Eugenics: fact and fiction

QuestioningYou’ve probably already heard of the American Eugenics Sterilization Program, in operation in the late 19th, early 20th century. If not … a quick résumé by way of context for today’s post.

The ‘program’ was designed to preserve and improve the strongest and ‘best’ within the society, and it did so by preventing the birth of babies to men and women with mental and social problems: the ‘mentally defective‘, ‘morons‘, the ‘feeble-minded‘, those with epilepsy, families on ‘welfare‘ – the very language makes us cringe today, doesn’t it?  But sterilizing these unfortunate citizens was considered to be in the ‘public good‘. It was later judged – rightly – as a terrible violation of human rights, but it’s only in the last few years that any sense of justice or compensation has been offered.

Most states stopped this practice after World War II, uncomfortable with the comparison with the Nazi eugenic experiments in Germany, about which much more is known, but North Carolina continued, and is said to have carried out as many as 7600 such operations between 1929 and 1975. North Carolina was also the only state to give social workers the power to petition for the operation for specific individuals; elsewhere it was limited to those already in institutions.

It’s against this shameful period of American history that Diane Chamberlain Necessary Liessets her novel, Necessary Lies. As a former social worker herself, she’s probably got a certain edge when it comes to writing on this subject; she beautifully captures the ambivalence some professionals felt in determining what was in the best interests of their clients at a time when few choices existed; punitive views relating to sexual behaviour were prevalent; little was known about genetic inheritance; racial intolerance was rife; and class distinctions were very much the norm.

Jane Forrester is a young idealistic woman, newly married to a doctor, Robert, who disapproves of wives working. Jane unilaterally decides to postpone having children herself in order to become a social worker and help vulnerable families. When she encounters the Harts – two teenage girls, an illegitimate son, and an ageing grandmother – living in abject poverty, she simply cannot stand by while their rights are abused by well-meaning professionals. Before long she’s in deep trouble with her husband, her colleagues, and the police.

Chamberlain herself acknowledges that this was a research-heavy novel, but it doesn’t come across that way. The simplicity of the narrators’ voices, the un-sensationalised story line, the authentic emotions, combine to make this tale both challenging and gripping, heart-stopping and powerful. I’m not sure I’d have had the courage to be a Jane Forrester, but I’d definitely have wanted her on my side, deceptions and head lice notwithstanding! How about you?

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Cursed inheritance

As I promised last week, good news this time!

Eight or nine years ago I chose Motor Neurone Disease for the degenerative condition journalist Adam O’Neill is battling with in my novel, Right to Die; Right to Diea disease that will strike right at the heart of his being and his aspirations. So I was fascinated to find Lisa Genova chose Huntington’s Disease for her tough Boston cop Joe O’Brien in Inside the O’Briens, a disease that stops his career dead in its tracks and forces him to face the horrors of genetic inheritance.

Both MND and HD are frightening, crippling, fatal conditions that rob the person of control and dignity. Getting inside the mind and body of either an Adam or a Joe is very scary stuff. So, having been there myself, I was extra curious to see how someone else tackled the ethical minefields and personal challenges associated with such a scenario; especially someone with Genova’s credentials.

This time she has inserted occasional tracts of medical explanation about the condition into her novel to inform the reader, positioning herself as a scientist; but for me her real strength lies in her ability to describe the illness from the inside. She puts the humanity into the science, compassion into the clinical facts. The insidious onset before policeman Joe even suspects the truth. The sudden weird and inexplicable bursts of anger. An inability to process instructions. Finding it impossible to keep legs and feet still on parade … in police exercises … in a restaurant. And then, once he’s diagnosed, the inexorable progression. The involuntary indiscriminate throws – punches, food, cutting words – that label him as drunk, deranged or dangerous to passers by. The red rages that cause his wife Rosie’s black eyes, terrible destruction in the walls of the family home. The fear that won’t let him ever hold his grandson. The depression that makes him constantly check his gun is still loaded and primed.

We peer into his past when Joe recalls his mother’s antsy wild black eyes as she lay in a mental institution for years; condemned to be known as an incurable drunk. The questions hitting him now nearly forty years later. How could she have remained an alcoholic in the hospital all those years? Why had his father stopped taking Joe and his sister to visit her? Why had his strong dad wept like a baby? What lessons did she actually teach him?

The author powerfully captures the brutal reality through the eyes of the rest of the family too:

Inside the O'Briens‘Huntington’s isn’t the absence of moving, thinking, and feeling. This disease is not a transcendental state of bliss. It’s a complete freak show – ugly, constant, unproductive movements, uncontrollable rage, unpredictable paranoia, obsessive thinking.’

We see the dawning terror in his wife’s eyes. Her silences. Her withdrawals. Her desperate stroking of the crucifix round her neck, the beads of her rosary. Her binning of the symbols of her ingrained Catholic faith.

Then there’s the terrible implications for their four beloved offspring. Vegan yoga teacher, Katie, living life in ‘peace, health and harmony’. Ballerina Meghan, limbs and body and mind all supple, beautiful, desirable. Firefighter JJ, taking his health and fitness for granted, using it to save others; preparing for imminent parenthood with his wife Colleen. Rebel Patrick, sewing his wild oats liberally, experimenting with life. Each one of them carrying a fifty percent chance of harbouring this cursed disease. Nothing can change that fact. Nothing can halt, slow or reverse this terrible thing. Joe, their father, is powerless to protect them. Indeed it was he, their supposed protector, who handed on the poisoned chalice in the first place. And now he must stand on the sidelines and watch them all battling with the impact of their cruel inheritance. Only they individually can decide whether to take the test, if they want to know the truth lurking unseen in their own DNA. JJ and Colleen may not even choose on behalf of their baby son.

How should Joe deal with his burdens? Is there a way out? Should he take it? How can he best support his children? Should the youngsters go for testing? What are the implications if they do/don’t? Would I want to know?

I love books that are at once a gripping read and challenge me to think deeply – especially in the field of medical ethics. And even though I’ve been into these questions already myself as an author, I thought this book was brilliant and awarded it five stars. Beautifully written, compassionate, perceptive, engrossing, provocative. Genova at the top of her game again. Seems I prefer her as neuroscientist-turned-novelist rather than simply novelist. That could well be something to do with my own position on the spectrum; nevertheless the experience of reading Love Anthony and Inside the O’Briens one after the other, has taught me something of value for my writing too.

So, Genova has already tackled Alzheimer’s, Left Neglect, autism and Huntington’s. What next? MND, she says – or as she calls it ALS. Ahah! I await that novel with bated breath!

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