What’s wrong with screening for disabilities?

In a recent article on the Daily Life, Alecia Simmonds looks at the problems of screening foetuses for disabilities. She makes a strong argument, and brings together a lot of the criticisms of disability screening. Most importantly, she briefly looks at the idea that making an informed decision on whether or not to have disabled child is not actually a choice with equal options. If society does not support one option, if life will be more difficult financially, if it will strain the relationship with your partner, if people will see your choice as a ‘tax burden’, if the majority will consider your choice foolish, then really, what choice do you really have?

But she also throws in a bit of hyperbole to her essay. In referring to a German study which found that 90% of women whose foetuses were diagnosed with Down Syndrome terminated the pregnancy, Alecia says “as a society we are on a nightmarish quest for biological perfection and crushing normality.”

I would consider a nightmarish quest for biological perfection to be the kind seen in Gattaca, where we choose our child’s eye colour, their height, their intellect, their athletic ability (which many of us already do, in choosing a mate. We don’t choose who we are attracted to, but surprisingly, it’s not the disfigured midgets who cant pass an IQ test or catch a ball that are getting all the dates). Choosing not to give birth to a child that will lead a significantly impaired lifestyle is hardly in the same category. These children may well lead happy lives, but they are not ignorant to the things they will miss out on in life. Choosing to bring them into a world where most will be deprived of many simple pleasures like steady work, independent travel, relationships or a family of their own, when they had the option not to, could almost be considered cruel.

Of course, saying this in public is always a dangerous thing to do. Alecia sums it up here:

“I once told Toby that I was helping an academic with some research on the politics of aborting foetuses with disabilities. ‘But that’s ridiculous’ he scoffed. ‘That’s like saying I shouldn’t have been born’. He laughed, but beneath it you could see the hurt. The unspeakable agony and outrage of being told that the world would have been better off without you.”

Because people think that if you are pro-disability screening, you are making a statement that disabled people are better off never having been born. That the world would be better off without them.

If disability screening was allowed, Toby may not have been born, correct. But let’s not forget that at the time he may have been aborted, he wouldn’t have been ‘Toby’. He would have been an unnamed zygote. Or a foetus. Which to many, many people, is not that dissimilar from any of the other sperms or eggs that are expelled during masturbation or menstruation. Just like the woman who chooses an abortion because it will interfere with her career, or she is unable to support a child, or it will interfere with her general lifestyle, Toby could have been terminated because the life he will lead will automatically put the woman, and the child itself, at a disadvantage. ‘Toby’ could instead, be the next ‘healthy’ foetus. The next sperm and egg to combine that will not enter the world immediately set up for a life of challenges and hurdles that will affect everyone around him.

It may be a societal problem that disabled people are not well enough supported, and it is a pity that they are not, but it is a fact. Most parents do not have the time and resources to adequately care for a disabled child.

I do not believe the world is better off without disabled people – in fact, I think the diversity makes the world a more colourful, wonderful place. Disabilities people make society more tolerant, more accepting and kinder. They teach all of us about perseverance and overcoming challenges and contribute to a society of humility and humbleness. Many people with disabilities are also capable of incredible feats – the Paralympics certainly proved that and there are countless examples of artists and geniuses who battled with disability.

But there should be no obligation to bring a disabled child into the world, nor should there be resistance against disability screening. Is it taking the easy route? Yes. But why shouldn’t we? Raising a child is hard enough as it is. Why should we be expected to accept the random chance that it will be one hundred-times harder? We may love them unconditionally. They may even be one of the lucky ones who can live close to a normal life. But aborting a foetus that will be born disabled causes no more harm than aborting one who will get in the way of your career. Choice allows us to be selfish. Not all people will be. We accepted it in the 1960s with birth control. Why not accept it now?


Black market body parts – Is it ethical to sell human organs?

kidney transplant surgeryOn a surgery table in an Indian warehouse just outside New Delhi, a local labourer lies face up on the table. Above him, a doctor wields a scalpel, hurriedly slicing through his abdomen to remove his  left kidney. The operation means he will be at a higher risk of severe injury, high blood pressure and kidney abnormality for the rest of his life, but when the surgery is complete, he stuffs an envelope into his pocket, making him $1000 richer.

At the same time, a foreign tourist waits in the operating theatre of a nearby hospital for his transplant. Unable to find a suitable donor at home and running out of time, he has travelled to India on the assurance of a guaranteed match. For the organ alone, he paid $37,500.  Hundreds of thousands of others like him bide their time on public waiting lists, until desperation pushes them to the same ends. And so continues the cycle of one of the most gruesome white-collar crimes to date.

Three years ago, Time magazine reported  how Indian police shut down  a black market organ transplant ring that had harvested kidneys from more than 500 Indian labourers, sometimes against their wishes, and  sold them to cash-wielding foreigners desperate for transplants. In a situation where patients in the UK, USA and even Australia can die waiting for an organ, transplant tourism is a lucrative business. But the United Nation’s World Health Assembly forbids the sale of body parts. So why is it that paying for organs seems so intrinsically wrong – Is it simply because of the issue of exploitation? Would we still feel  uneasy if there were a regulated market for organ sales? Is it ethical to pay people for body parts?

Professor Dame Marilyn Strathern asked that very question to a curious crowd at the Australian National University last night. As Chair of the Working Group on Human Bodies in Medicine and Research  for the UK’s Nuffield Council on Bioethics, she is overseeing an inquiry into (amongst other things) remuneration options for organ donors – from free funerals to cold hard cash.

Illegal as it may be, black market organ trading is borne out of a global health issue – the worldwide scarcity of donated organs. Right now the fate of 80,000 people in the US alone rests on a waiting list for organ donations. Worldwide, the story is the same. As we deal with an ageing population and advances in medical treatments, more people would benefit from transplants now than ever before.

As a solution to the critical shortage, some scientists are investigating the use of animal organs to meet demand, while some countries and states (like Victoria and Western Australia) explore ‘opt-out’ systems for organ donations, where everyone is a donor upon their death by default unless they have legal documents stipulating otherwise. Another option, being considered by the Nuffield Council on Bioethics is the creation of a legitimate market for the sale of organs.

According to Professor Strathern there is a ‘meaningful absence of money’ in the donor-recipient relationship. When the gift is as large as a part of ourselves, the receiver has a need, an urge to reciprocate in some way. When there is no currency, and there is no way for recipients to ‘give back’, the debt can become a burden.  Ethnographical studies have looked at participants’ attempts to relieve the debt, which include writing letters of thanks to donors, thinking of the donor daily, or feeling obliged to take care of themselves better. In some cases, recipients feel as if they cannot talk about their ‘ongoing medical misery’ since the others’ sacrifice is bigger.

Likewise, for families of people who require organs, there is a sense of obligation, guilt and duty to give up an organ, which can later lead to resentment. Even in cases when donors say they ‘didn’t even have to think about whether or not to donate’ one must consider the emotional coercion. Would any of us be willing to watch a loved one die because we didn’t sacrifice a non-vital organ?

What could prevent all of this however, is the availability of more organs, and the ability to pay for them, therefore eliminating the altruism from the act and warranting a sense of ‘justice’. The act of ‘give and receive’ is the basis of our economy and our relationships – when someone gives you a present, or invites you to a wedding, there is a sense of obligation to reciprocate. Organ donation is one of the few transactions where givers receive nothing in return. Whether or not true altruism exists is debatable, but the topic for another post. But as an example, in many donors there is a hope that their altruism will encourage the altruism of others, potentially to their benefit. (Professor Strathern used the example of a mother donating her kidney to a friend, with the expectation that if she needed one down the track, her two children would be able to donate).

In some countries, commercial systems and altruistic systems already exist side by side. In egg donation in the USA for example, women donate their eggs for research (often excess from IVF) for free, but can also sell eggs to infertile couples for high prices. Is money then, the currency needed to alleviate the expectations on family members, and the burden felt by recipients?

Joyce Robbins, co-director of the campaigning group Patients Concern argues that the act of paying is abhorrent.

“Paying the family of someone who has just died could tempt them to go against the wishes of a loved one at a time when they are most vulnerable.”

Remuneration by means other than cash are potentially the middle ground. Contributions to the donor’s funeral, or payments made to families after their death all avoid potential rash decisions by people needing quick cash. Unfortunately, they do not avoid Mrs Robbins concern of coercing people in vulnerable positions.

Unless the market is government regulated and subsidised by the health system, it also does little to alleviate the ethical concern that rich people will have quicker access to life-saving surgery, while poorer people depend on donations of friends and family.

In Iran,  a commercial system overseen by Government is already underway whereby the donor of the kidney gets financial compensation from the Government and free health insurance for one year. In nine years,  the waiting list for transplants has been obliterated. While no similar move is yet on the cards for Australia, the Nuffield Council report is due on October 11.