Institute for Ethics and Emerging Technologies


The IEET is a 501(c)3 non-profit, tax-exempt organization registered in the State of Connecticut in the United States. Please give as you are able, and help support our work for a brighter future.


Search the IEET
Subscribe and Contribute to:


Technoprogressive? BioConservative? Huh?
Quick overview of biopolitical points of view




whats new at ieet

Bio-Cryptoeconomy: Nanorobotic DACs for Cell Repair and Enhancement

Augmented Reality: Pokémon GO Is Only the Beginning

No Mans Sky: A Deist Simulated Universe

Interview with Gerd Leonhard and his New Book TECHNOLOGY vs. HUMANITY

Physics vs. Human Perception: Which Represents Reality?

This Is Where Europe’s Upcoming Rover Mission Will Explore Mars


ieet books

Philosophical Ethics: Theory and Practice
Author
John G Messerly


comments

almostvoid on 'Augmented Reality: Pokémon GO Is Only the Beginning' (Aug 24, 2016)

almostvoid on 'No Mans Sky: A Deist Simulated Universe' (Aug 24, 2016)

instamatic on 'Is Dropping Out of College Throwing Your Life Away?' (Aug 23, 2016)

Rick Searle on 'Our emerging culture of shame' (Aug 22, 2016)

Alexey Turchin on 'Why Running Simulations May Mean the End is Near' (Aug 22, 2016)

RJP8915 on 'How VR Gaming will Wake Us Up to our Fake Worlds' (Aug 22, 2016)

ChrisW on 'A.I. Apocalypse: More Myth Than Reality' (Aug 22, 2016)







Subscribe to IEET News Lists

Daily News Feed

Longevity Dividend List

Catastrophic Risks List

Biopolitics of Popular Culture List

Technoprogressive List

Trans-Spirit List



JET

Enframing the Flesh: Heidegger, Transhumanism, and the Body as “Standing Reserve”

Moral Enhancement and Political Realism

Intelligent Technologies and Lost Life

Hottest Articles of the Last Month


Op-ed: Climate Change Is the Most Urgent Existential Risk
Aug 7, 2016
(4962) Hits
(4) Comments

Consciousness, Reality, and the Simulation Hypothesis
Aug 4, 2016
(4395) Hits
(15) Comments

Shedding Light on Peter Thiel’s Dark Enlightenment
Aug 15, 2016
(4140) Hits
(2) Comments

Cognitive Buildings!
Aug 1, 2016
(3374) Hits
(1) Comments



IEET > Rights > Disability > Life > Access > Directors > George Dvorsky

Print Email permalink (9) Comments (15114) Hits •  subscribe Share on facebook Stumble This submit to reddit submit to digg


Helping families care for the helpless


George Dvorsky
By George Dvorsky
Sentient Developments

Posted: Nov 6, 2006

Bioethicists who work in health care are frequently called upon to make difficult decisions in often less than desirable situations. Thankfully, the steady introduction of new technologies provide ethicists, health practitioners and families with a variety of options. The trick these days is to choose the most desirable course of action. But the fact that most new technologies and the manner in which they are applied often appear shocking and radical at the outset makes ethical decisions even more difficult.

Take the recent case of a severely disabled 6-year old girl and her parents’ decision to administer her estrogen treatments to deliberately stunt her growth. According to her parents, the reason for wanting the girl to remain small have to do with their ability to care for her on an ongoing basis. The fear is that she will grow too large such that the parents will no longer be able to care for the girl and will have to be institutionalized. The girl was also given a hysterectomy.

At first blush, this sounds quite bizarre and even a bit extreme. My own initial reaction was negative; any time I hear about constraints (or what might even be considered mutilation) being deliberately imposed upon someone my alarm bells go off. But after deeper analysis, I have come to conclude that I agree with the parents and their medical advisers.

Before I get into my reasoning it’s important that that the girl’s condition be described for proper context. She is 6-years old and suffers from severe combined neurologic and cognitive impairment; she is physically disabled and will permanently have the mental capacity of an infant. There is currently no known treatment to help alleviate this. The girl can respond to her parents and siblings by vocalizing and smiling in response to care and affection. She is described as being an “integral, and much loved, member of the family.”

That said, her parents recently came to the conclusion that her continued growth would soon start to pose a problem. Children with combined neurologic and cognitive impairment are utterly dependent on their caregivers much like an infant is – they cannot bathe, dress and transport themselves without assistance. In these cases, the responsibility almost always falls on the parents. Over time, as the child grows into an adult, these challenges increase.

Given these factors, and considering the loving and healthy household that the girl currently finds herself in, the question must be asked: Will the estrogen doses and hysterectomy reduce the quality of life for this girl? One could make a strong case that, by virtue of the fact that her parents will still able to care for her, that her quality of life will in fact increase (or remain consistent) relative to the kind of care she might hope to receive by her parents should she not receive these treatments, or considering the introduction of a 3rd party and her potential response and adjustment to it.

Moreover, this girl is severely disabled enough such that her self-awareness is virtually negligible. She is barely engaged with her outer and inner worlds. Nonetheless, like an infant, she requires care such that she remains comfortable and finds herself in a loving environment. Ultimately, however, the estrogen doses are not so much for the girl as they are for the parents. Aside from the enhanced care that she will receive from her parents as a result of the treatments, the doses will have no bearing whatsoever on the girl given her permanent condition.

A colleague of mine noted that there are some potential abuse issues that need to be addressed. For example, is the resource-crunched medical establishment more inclined to have parents take the burden of care? Is this a way of passing the buck? Is the hysterectomy really necessary?

These are valid concerns, but I think they can all be addressed.

First, I believe the wishes of the parents are what is driving this decision and not the demands of the medical institution. In this case, it appears to me that the needs and desires of the parents are being met.

As for the hysterectomy, I have to question the value of keeping this girl fertile. If the concern has something to do with the girl’s dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience any sense of indignity. Nor do I believe this is somehow demeaning or undignified to humanity in general; the treatments will endow her with a body that more closely matches her cognitive state – both in terms of her physical size and bodily functioning. The estrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby.

Stepping back a bit, it’s obvious that this is an undesirable situation to begin with. I have to wonder if this case qualifies as a so-called ‘wrongful birth.’ On a related note, the UK’s Royal College of Obstetricians and Gynaecology are now urging health regulators to consider allowing the “active euthanasia” of severely disabled newborn babies (notably when babies are born with such debilitating and painful conditions as severe spina bifida). “A very disabled child can mean a disabled family,” notes the College, “We would like the working party to think more radically about non-resuscitation, withdrawal of treatment decisions, the best interests test, and active euthanasia, as they are ways of widening the management options available to the sickest of newborns.”

One would hope that future medical technologies will help severely disabled children overcome their debilitating impairments – but the reality of the situation is that such treatments are quite a ways off. This girl is alive in the here-and-now and as such should be given the appropriate level of care. And of equal importance, the family’s needs have to be considered as well. In this particular case, it will be through the estrogen treatments that the parents will be able to make the best of a difficult situation.


George P. Dvorsky serves as Chair of the IEET Board of Directors and also heads our Rights of Non-Human Persons program. He is a Canadian futurist, science writer, and bioethicist. He is a contributing editor at io9 — where he writes about science, culture, and futurism — and producer of the Sentient Developments blog and podcast. He served for two terms at Humanity+ (formerly the World Transhumanist Association). George produces Sentient Developments blog and podcast.
Print Email permalink (9) Comments (15115) Hits •  subscribe Share on facebook Stumble This submit to reddit submit to digg


COMMENTS


Dear George,
Nothing is right or wrong.  All one can do is to remain and let nature takes it course.

I am a pwd myself and in my course of time I have seen many like what Asley and her parents and what they are going through.
Unlike Asley and her parents, those that I know of are from Third World country where the standard as far as healthcare is concern is worse than that in the US. But, yet people, like Asley and her parents, managed to go through, as nothing is impossible, if we truly believe better time is coming.

With stem cell technology just knocking outside the door, it won’t be long before some solution is found to help Asley. Don’t interfer with her natural growth or she will conderm her parents for ever.

Don’t stop her growth. Let her grow naturally into what God want her to be like.
She is truly beautiful and I can’t imagine what she would look like when she grow older with a stunt body.

With latest gadjet, in lifting an adult and on Independence Living concept so well in place in the US, why should Asley’s parents worry.

It is in every parents dream that their children will always remain that sweet, innocent look, but nature doesn’t work like this, eventually Asley will grow old and God knows what she may look like.

George, do pass this message to Asley’s parents.

What ever their motive is, anything apart from natural will be devasting for Asleys. They won’t be around to see her suffering from their decision.





Euthanizing disabled newborns is utterly unethical and should not be considered under any circumstances.  Thanks to ultrasound, we generally know if a baby is going to be born with a major disability, so abortion is always an option. Once a baby is born, you don’t get to kill him or her.

Spina bifida is just about gone, thanks to the addition of B vitamins to flour.  My friend Andy has spina bifida and is happy to be alive, thank you very much.  I have to wonder if this isn’t about National Health trying to save money over the lifespan of the person with disabilities, by ending that person’s life at the very beginning.





George,

It’s like you said in your article, we are a long way off from having a cure, or anything resembling such for these kinds of disabilities, and even with the new stem cell technologies that are emerging every day, it will still be a while before the jury comes back on whether or not it is ethical. I’m sure you know more about that then I do. I agree that the parents are fueling this discusion and ultimately it is their descisions that have prevailed. Whether or not people agree, at least now this young girl can stay in the loving environment that she knows, and her parents can continue to care for her without to many hardships.





Mr. Dvorsky,

I recently had the privilege to read your article as a class assignment. I normally don’t say this but, I was actually excited about delving into this topic. Yet, perhaps even more excited, no, better yet, relieved that I was assigned to an author that shared my viewpoint on the “Ashley X” procedure. Through such a controversial topic, I had a hard time figuring out my own stance. So many questions were flying through my head like, is this ethical at all? Did the parents jump into this decision too soon? And lastly, how do you measure her cognitive state? Would she want this? Yet, after reading your article, it confirmed my initial reactions. At first glance, this act is heinous. But, the more one thinks about it, I would have to agree with you, it makes a lot of sense. Or, as much sense as you can make out of the matter.

Thank you.





George,

Much like you when you first heard of the operations that were being preformed, I too was skeptical. The idea of performing such drastic procedures on a little girl who can not voice her opinion seemed unethical. But after more information on the subject and her condition of living I reached a better understanding of the situation and how her growth will affect her as well as her parent’s ability to provide adequate care for her. I believe the parent’s decision was in the best interest of their child.





sir i m going to take part in a debate compitition and my topic is"girl can better take care of parents” i haveto speake on it.and i dont have any deep information about it. plz give me some info about it.





Thanks to the addition of B vitamins to flour. My friend Andy has spina bifida and is happy to be alive, thank you very much. I have to wonder if this isn’t about National Health trying to save money over the lifespan of the person with disabilities, by ending that person’s life at the very beginning. www.destinol.com





I’m honestly in favor of euthanasia.  Ashley’s case would certainly qualify in my book. 

I don’t think it makes sense (ethical, emotional, financial, psychological, etc.) to keep this child alive who has no cognition whatsoever at the expense of the entire family.  There are brothers and sisters whose lives are altered significantly and unfavorably due to the needs of the one child who demands the bulk of her parents time and attention.  Worse still, Ashley is no better off for that attention.  It’s time wasted.

Further, when Ashley’s parents die, who will care for Ashley?  Her siblings?  Probably not - it’s not even fair to ask it of them.  Tax payers, that’s who.  Ashley will cost the government tens of millions of dollars before she leaves this earth yet her life was of no consequence to her, of no benefit to herself, of no interest, of no joy, of no anything but to cause pain, financial burden, time, effort and energy to a family and a society.

No, I don’t hate the disabled - far from it.  But I don’t consider Ashley disabled; I consider her a body without a brain.  It’s unfathomable to me why we would keep the body alive, given the enormous drain.





“There are brothers and sisters whose lives are altered significantly and unfavorably due to the needs of the one child who demands the bulk of her parents time and attention. “

Mikela, you REALLY need to spend some time talking with siblings of children who are severely disabled. I guarantee you that your opinion will flip 180 degrees.





YOUR COMMENT (IEET's comment policy)

Login or Register to post a comment.

Next entry: Bostrom defends H+ on BBC3

Previous entry: What does it mean to be an “ethical futurist?”

HOME | ABOUT | FELLOWS | STAFF | EVENTS | SUPPORT  | CONTACT US
SECURING THE FUTURE | LONGER HEALTHIER LIFE | RIGHTS OF THE PERSON | ENVISIONING THE FUTURE
CYBORG BUDDHA PROJECT | AFRICAN FUTURES PROJECT | JOURNAL OF EVOLUTION AND TECHNOLOGY

RSSIEET Blog | email list | newsletter |
The IEET is a 501(c)3 non-profit, tax-exempt organization registered in the State of Connecticut in the United States.

East Coast Contact: Executive Director, Dr. James J. Hughes,
56 Daleville School Rd., Willington CT 06279 USA 
Email: director @ ieet.org     phone: 860-428-1837

West Coast Contact: Managing Director, Hank Pellissier
425 Moraga Avenue, Piedmont, CA 94611
Email: hank @ ieet.org