Otago University Bioethics Director must resign following discriminatory paper on Down syndrome

Tuesday March 5, 2013

by Mike

Down syndrome, Eugenics, Genetic Screening, Professor D Gareth Jones

Otago University Bioethics Director must resign following discriminatory paper on Down syndrome

Saving Downs demands the resignation of Otago University’s Director of Bioethics following the publishing last week of a highly offensive and discriminatory paper about prenatal testing for Down syndrome.

Professor Jones acknowledges that “prenatal testing may result in fewer people with Down syndrome” and then attempts to dismiss any ethical concerns over such an outcome. Such a possibility is extremely problematic as it devalues the lives of people with Down syndrome by reducing their birth prevalence. It is in direct conflict with basic principles of human rights and dignity.

Professor Jones states in his paper:

“First, we value an ethic that stresses the importance of ‘doing the most good’. On these grounds we accept that in some cases, the perceived disadvantages resulting from a Down syndrome pregnancy (to child and family) may outweigh the perceived good from the child’s life.”

He is reported here as saying:

”For some families, raising a child with Down syndrome will be immensely difficult, and it is for this reason that we allow the option of termination.”

These statements are false. Children with Down syndrome live good lives and are loved and valued members of their families. Concepts that they are a “disadvantage” or “immensely difficult” are extreme forms of discrimination that reinforce negative stereotypes towards them. It exposes them to harmful attitudes, bigotry and prejudice. Saving Downs’s spokesman Mike Sullivan said that “There is no place for such attitudes in our society”.

Professor Jones has an established track record of discriminatory language. In this paper on infanticide of newborns with Down syndrome there are offensive quotes such as “suffering from Down syndrome”, “infants with deformities”, and “parents struggling with deformed children”.

Mr Sullivan said that “such attitudes are extremely hurtful and false. People with Down syndrome are not deformities and they are not sufferers. Such concepts are harmful, discriminatory, ablest and eugenic”. Mr Sullivan calls for Professor Jones immediate resignation, noting that “He has demonstrated an extremely discriminatory view towards people with Down syndrome. Such attitudes are not welcome in our community and are incompatible with a leading academic role relating to ethical conduct”.

In conclusion Mr Sullivan said that “People with Down syndrome must be accorded the full respect and acknowledgement of human rights that are afforded to other New Zealanders”.

A rebuttal of Professor Jones paper can be read here.

About the Author

Mike Sullivan, Spokesperson for Saving Downs

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Brad

Mike –

I wholeheartedly agree with the professor’s comments “the perceived disadvantages resulting from a Down syndrome pregnancy (to child and family) may outweigh the perceived good from the child’s life.”, and I think the abortion rate data proves this.

The issue is that the “perceived disadvantages” are much higher than the “realized disadvantages” that families experience. there is a bias in the system. The “perception” is an irrelevant factoid that speaks to a family’s duress in a year or so time frame. The “realized disadvantages” can arise from regret on either side and are not quantified in his argument.

Mike

Those are good points thank you Brad. I had thought about presenting that angle, but I didn’t want to reinforce the false perception. There is a fundamental flaw in his reasoning, as he has built an ethical position from a perceived fact as opposed to realised evidence. Pretty slack work for a bioethicist.
http://www.facebook.com/sjdymock Suzy Dymock

You are right in that it’s all skewed, completely biased and based on incorrect assumptions (or “perceptions”). That’s the most frustrating, maddening and extremely scary and disturbing aspect about this whole screening programme-it’s based on fears, assumptions, ignorance and prejudice by the NSU, bio-ethicists, MOH, researchers, geneticists…all those who are in control. And it’s also noticeable that they target those who are unable to advocate effectively for themselves-change the word DS with homosexuality for example and it would all be a different story. Why don’t they “pick on someone their own size?” as the old playground saying goes (and certainly applies!).

Jerzy Kaltenberg

the problem is that a large percentage of those with Downs will never be ‘their own size’. we should not promote pathology. Being realistic is not ‘picking’ on anyone. I wonder if you’d make the same argument regarding vaccinations…after all, bacteria can’t speak for themselves either.

Mike

This site advocates for the rights of people with Down syndrome. Comments that are offensive or derogatory about them will not be tolerated. The only reason your original post is being left here is because it proves the point that the paper reinforces negative and false views about our beautiful, loved children. So, for the time being it is being left there, solely for that purpose.
Suzy Dymock

what an idiot…..honestly. I’ve been at this a long time but this would seriously have to be one of the most ridiculous responses-sigh.

Suzy Dymock

sorry-haven’t been able to read past the word “choice”…….(eyes glazed over)….Hitler talked about “useless mouths to feed” and people in the 21st century are talking about “burdensome people” (all under the guise and ultimate moral disclaimer of providing “choice”)-lest we forget.
Suzy Dymock

……as in “amoral” disclaimer……
Jerzy Kaltenberg

Funny that the idea of people having a right to choose causes your eyes to glaze over. It is both unsurprising and stereotypical for demagogues to make comparisons with the Nazi regime, Hitler, etc. i Understand that in your fundamentalist zeal you desperately want to keep people from being able to, from being empowered to make informed reproductive choices.

You are not alone in this. There are still people in New Zealand who would prefer women couldn’t use contraception, couldn’t choose abortion, finally – couldn’t choose how to live their lives. They welcome you with open arms.
Mike

Or you could present a rational argument in response to our rebuttal of the Jones/Cole paper rather than resorting to personal attacks.
http://www.facebook.com/mbsmontgomery Mary-Beth Santora Montgomery

But people do have the choice. This paper is upsetting because it calls for ‘post birth abortion’ That is not bacteria, that is murder. I can’t get my head around that.

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Peter White

Everyone seems to forget that you don’t just raise a child with Down syndrome, you may also need to care for an adult. A family that cares for a child will later have to care for an adult who may not be capable of independent living. Parents in their 30′s or 40′s could likely give adequate care to a child. What happens when their child is 40 or 50 and they are in their 70′s or 80′s?

http://www.facebook.com/sjdymock Suzy Dymock

These days most are flatting, married, got jobs….those that are more dependent are supported. .Not being able to live entirely independently is no reason to have a screening programme that results in the decimation of people who have a degree of dependence as adults-should we apply the screening to the whole human race then as they, in the vast majority of cases, need support when elderly and infirm. I would love my son with DS to live with me till I’m old and doddery-he can look after me (as they most often do) and keep me company but he is already, at 18, talking about going flatting. It has really saddened me that he will want to leave home soon just as his siblings and friends (disabled and non-disabled) have-think you might need to update your thinking somewhat.

Jerzy Kaltenberg

‘Professor Jones acknowledges that “prenatal testing may result in fewer people with Down syndrome”’ –> and the problem is? Shouldn’t we all be striving to reduce numbers of pathologically diseased and debilitated individuals born? Downs is a debilitating condition which can be detected prenatally, why are some arguing for an increase in the numbers of people who often will never be able to fully take care of themselves?

Mike

This sums it up.
http://www.facebook.com/profile.php?id=100000817958877 Stella McLeod

So what do you think we should do with the people who cannot take care of themselves because of illness or injury sometime during their lives after they are born?
By the way people with Down syndrome are not “pathologically diseased and debilitated”. Every single illness or health condition they can have (and no individual will have every single one) anyone could be born with even if they don’t have an extra chromosome. Most people with intellectual disabilities do not have Down syndrome.
I think it would be very scared to live in a world where no one was prepared to look after anyone else but themselves. Fortunately there are people willing to care for others even if they are not related.

Jerzy Kaltenberg

You are missing the point. If we can avoid bringing unnecessary suffering into this world, we should avail ourselves of that opportunity. We should avoid perpetuating genetic diseases if we can. There will still be plenty of people to take care of, “people who cannot take care of themselves because of illness or injury sometime during their lives after they are born”, but at least we won’t have caused their suffering, and the suffering of people who have to sacrifice otherwise productive lives to take care of them, and the suffering of those who go without so that some pathological breeder can have a downs baby to take care of at the public expense. I might add that it is incredibly selfish to argue for perpetuation of misery just so that we may have someone to take care of.

Suzy Dymock

duh-Ds isn;t genetically perpetuated….doesn’t even know what he’s talking about…..”pathological breeder”…..geez Jerzy-get some help.

Jerzy Kaltenberg

It is natural and healthy to want healthy babies. We should have all the opportunities afforded us by technology to that end. You are essentially arguing that providing candles is bad, because we might then find out that some are blind.
Mike

My daughter is healthy, more so than many of her class-mates. Not that one’s health defines one’s dignity as a human being.
Suzy Dymock

Haha-comparing people with disability with bad candles….what a perfect illustration of what this is all really about. Thanks Jerzy!
Jerzy Kaltenberg

Are you sure you’re not having issues with reading comprehension, Susy? Candles are a technology. Prenatal tests also. You would rather curse the dark rather than light a candle.
Anonymous

“Perpetuating genetic diseases” in this case means not preventing people from being born with genetic diseases, not that DS is genetically perpetuated. Although, of those individuals with DS who succeed in having children, a much greater proportion of their children will have DS than children of parents without DS. So you could say that it is genetically perpetuated.

Regardless, you (Suzy and Jerzy) each clearly have different personal opinions but I feel that you should remember that you are debating an issue that affects the public as a whole. I agree with the general aspects of Jerzy’s posts but I don’t think that society has any sort of duty to reduce the prevalence of DS if we can only do that via abortion of affected fetuses. I tend to lean more towards having a duty to allow individuals to make well informed decisions without being coerced or being unduly influenced.

Brad (in comments above) raised a valid point in that the decision may be influenced by wider social norms such that perceived disadvantages are greater than realised ones. We could perhaps suggest measures such as pregnant women spending a week living with the family of a DS child to allow her to better assess the potential effects in her own situation. I don’t know how many women would find something like this worthwhile, nor how many women would make different decisions, but I personally don’t believe many people would.

Women will each have different values and beliefs and I would like to think that these are what people make decision on. I would develop the argument further by saying that people are, for the most part, products of their environments. If the social or political environment was influencing decsion making how far should we go in addressing this as I would argue that at some point we would be saying this type of person is wrong in their opinion so we must take measures to change the environment to prevent ‘perpetuation’ of their type. There are places for this but is this really on such place?

(to Suzy Dymock) I don’t know whether you or someone you know has a child with DS, but I am curious to know whether you think something like the proposal above would change people’s opinions and if so why?
I am not being sarcastic here, I don’t personally closely know anyone who is the parent of a child with DS so am interested to hear your thoughts
Anonymous

PS: (to Suzy) sorry, I was asking in reference to the idea of mothers spending a week with families who have a child with DS
Suzy Dymock

I have a beloved 18 year old son with DS who I owe a lot to for being there for me during difficult times in my life (he has a very high EQ and capacity for love). When I was pregnant with him in the UK I was unwittingly tested for DS and rung up by the Midwife to say I was at high risk for having a baby with DS and to go to the Ob for an amniocentesis and “termination if necessary”-the assumption was I would abort; something I thought about having worked with people with DS in institutions. I knew however that this would be discrimination against people with ID and remember writing to family to say I was glad to have the baby as I would forever have been prejudiced against people with DS-and wrongfully so. It would have been a TOP based on fear, prejudice and ignorance (something I knwo the midwife-who also said to me she would abort if she were me-and ob suffered from). It is also important to note that while the medical team was more than happy to tell me the baby had DS; they had a policy to inform me they didn’t tell paretns the gender of the baby as the city had a high number of Asians practising gender termination. So while they would not force me to have a disabled baby, they were most certainly forcing Asian women to have girl babies they didn;t want. You can;t terminate on the grounds of gender, so neither can you on the grounds of disability-its pure discrimination. In addition,at my son;s 6 week check up the GP told me gleefully that there had been a 100% detection rate of people with DS in the region that year and of the 4 detected only mine was born-the rest were terminated. This was my first taste of the eugenic effects of the screening. I then saw no babies, toddlers or pre schoolers with DS at the local DS Support Group (this correlated with the introduction of the screening) and was greeted by the physio at the Early Intervention Group with “oh a Downsie-we haven;t had one of those for years”-my first taste of the genocidal effects (the population of people with DS is being decimated by screening and collective “choice”). On being pregnant with the next child I was pressured to attend research at the Radcliffe Hospital in Oxford to take part in experimental tests including 3-D face scans (which we now have) for Downs-like features or cleft palate (now being terminated) and testing urine for a myriad of diabiliites. I declined to take part and returned to NZ for lovely screen-free pregnancy and normal number of people with DS.

http://www.facebook.com/mbsmontgomery Mary-Beth Santora Montgomery

I think your first sentence is where some people here have a disconnect with your opinion. Most people who have a family member with down syndrome do not see any unnecessary suffering; in fact quite the opposite. My son has been my greatest teacher. He has made me more patient and accepting of differences. He has to work harder at some things but that just inspires me. The people with down syndrome that I know are not miserable. And down syndrome will always exist. Abortions just prevent them from being born.

Mike

That’s a great succinct summary thanks Mary-Beth.

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