Tag: down syndrome

Bioethics Blogs

Fetal tissue and commerce

You may have seen in the general press that Indiana University is asking a federal judge to declare unconstitutional that state’s law banning research on the remains of aborted fetuses.  I noticed an article in the Wall Street Journal (subscription required).  An open-access account can be found here.

I oppose abortion, but I can imagine for the sake of argument that, if one allows for abortion, that it might be claimed that the tissue of an aborted unborn human could ethically be donated for research.  It seems to me that such an argument would construe this donation to be similar to donation of organs for transplantation.  In this case, the mother would be speaking for her (newly-deceased) unborn to make the decision, since the aborted one would not have decision-making capacity.

For such an action to be remotely ethical, donation of tissue could not in any way influence the decision to have an abortion–as, indeed, federal restrictions on fetal tissue research currently require.  There should be no profit to the donor or the abortion provider in the process.  In light of the Planned Parenthood brouhaha over this subject, I might suggest that the researchers seeking the tissue for research be required to bear any costs for the preparation of the tissue.  And something like the dead donor rule for organ transplantation would have to apply.  But that’s probably a trivial point in this case.  Never mind that the dead donor rule itself is under attack these days.

I imagine it’s clear that I don’t find this argument very persuasive. 

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Teaching Disability Studies in the Era of Trump by Pamela Block

In spring semester of 2017 we (Pam Block and Michele Friedner) co-taught the graduate course “Conceptual Foundations of Disability Studies.” Though the readings were the same as in previous iterations of the course, the emphasis and tone of the class shifted, not just because of the co-teaching but because we were now teaching in a context in which the rights and lives of disabled people are at increased risk. This essay will focus on one class session devoted to a discussion of how disability studies and eugenics are strikingly intertwined in some ways, and why it is salient and important to think about eugenics in the present moment, especially in relation to the current United States presidency.

Eugenics opens up a way to talk about immigration; traits and qualities of and in people; desirability; deservedness; “good” and “bad” science; and the making of facts. Eugenics comes to mind when we think of silencing and containing nasty women and ejecting bad hombres. While we are not arguing that Trump himself advocates eugenics, we argue that a study of the history of eugenics offers an entry point to considering the emergence of past and present norms and normals, especially in relation to perspectives on bodily variation. We also think that a discussion of eugenics affords different ways of conceptualizing what disability studies scholars Snyder and Mitchell (2010) call “able-nationalism,” (riffing off of Puar’s (2007) work on homonationalism). That is, a discussion of eugenics allows for consideration of how disability—and the values attached to it– is mobilized in different time periods, in the service to the nation.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Should We Cure Genetic Diseases?

June 07, 2017

by Professor Bonnie Steinbock

Should We Cure Genetic Diseases?

In “Trying to Embrace a ‘Cure’,” (New York Times, June 4, 2017), Sheila Black notes that in the near future there may be a treatment that could amount to a cure for the genetic illness she and two of her children have — X-linked hypophosphatemia or XLH. Although XLH is not life threatening, it has significant disadvantages, including very short stature (short enough to qualify as a type of dwarfism), crooked legs, poor teeth, difficulty in walking, and pain. A cure would seem to be cause for celebration.

But Ms. Black is ambivalent about the prospect. Although she acknowledges the potential benefits both to individuals and to society, the issue is, for her, complex.

Having a serious disability may enable the development of certain virtues. She writes, “… to be human often entails finding ways to make what appears a disadvantage a point of strength or pride.” Or, as Nietzsche put it,  “That which does not kill us, makes us stronger.”

It’s very likely that having polio made Franklin Roosevelt emotionally more mature and strengthened his character, but would that be a reason to oppose the development of the Salk vaccine? Comedians often credit their talent from having been bullied as children; novelists and playwrights find inspiration in their awful childhoods. Admiring their ability to overcome adversity does not mean being ambivalent about ending bullying and child abuse.

Another reason is that disabilities have created communities that are a source of support and identity.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Most pressing bioethics issue

In yesterday’s post Mark McQuain asked the readers of this blog what they consider to be the most pressing bioethics issue in the context of a call for our president to establish a bioethics council. He referred to my recent post on reproductive ethics and the manufacturing of children. I think that is important. I also think that abortion including the aborting of children with developmental abnormalities such as Down syndrome, euthanasia, and the treatment of children with gender dysphoria are very important. However, my most pressing concern related to bioethics in our society is freedom of conscience.

It is important that we express clearly the value of human life and how that impacts how we understand the ethics of things such as reproductive technology, abortion and euthanasia, but we are living in a time in which many do not listen to reasoned arguments about what is right. Much of our society believes that what is right is determined by how they feel and they desire to be free of any limits on what they can do. They also believe, somewhat contradictorily, that they should be affirmed in being able to do what they desire by having society help them do it; even if that means that others need to do things that they believe to be wrong. Our society is losing the concept of any objective moral values. Without objective moral values it does not make sense for someone to refuse another person’s request for help in fulfilling their desires based on conscience, particularly conscience informed by an objective understanding of right and wrong.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

All We Need is (Unconditional) Love

On March 24, 2017, Joe Gibes posted an entry on this blog, entitled “A ‘disabled’ person speaks out against a particular form of discrimination.”[1] That post featured links to several stories about Kathleen Humberstone, a young woman with Down Syndrome who spoke at a recent UN event commemorating World Down Syndrome Day, which was observed on March 21. After reading through Joe’s post and the… // Read More »

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

A “disabled” person speaks out against a particular form of discrimination

Amidst lots of dark and tragic stories, a bright ray on the BBC website this week: Kathleen Humberstone, a 17 year-old English girl with Down syndrome, addressed the UN in Geneva to mark World Down Syndrome Day.

Rather than reading anything I have to say, a far better use of your time would be to read what Ms. Humberstone said. You can find the full text here; if you scroll down you can listen to her speech and an eloquent talk her mother gave afterwards.

The speech is only 3 minutes 42 seconds, and the mother’s talk 5 minutes 48 seconds. It is well worth every second of your time to listen to these women. However, for those of you who don’t have the time or place to listen, I will give a few highlights here.

From Kathleen’s talk (when she refers to “testing,” she’s talking about prenatal genetic testing to detect and abort fetuses suspected to have Down syndrome):

Bonjour, Hello! I can’t believe I’m here! I’m at the UN, in Geneva! Do you know why? Because I have 47 chromosomes. That’s just crazy!! Thank you Down syndrome! I’m here to talk to you about my life and why it is worth living . . . I love everybody. I can’t help it! I hope everybody loves me. I have Down syndrome. Yes. Is that so wrong? So, why all this testing? Why? My name is Kathleen Humberstone and I love my life!!

From Kathleen’s mother’s talk:

You know that trisomy 21 happens to be one of the easiest disabilities to identify at the moment in utero. More will follow. And eventually all disabilities will be identifiable in utero. So, parents of future generations will have quite a few choices to make.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

UK report on prenatal testing calls for ban on sex disclosure

A new report by the UK’s Nuffield Council on Bioethics, “Non-invasive prenatal testing: ethical issues”, has probably pleased no one by trying to steer a course between banning abortions for sex-selection and allowing abortions for the most common kind of foetal abnormalities.

NIPT is a major breakthrough. It uses a blood sample taken from the pregnant woman and can be done from 9 or 10 weeks of pregnancy. It analyses DNA from the placenta that circulates in the woman’s blood to estimate the chance that the fetus has Down’s, Edwards’ or Patau’s syndromes, as well as single-gene disorders like cystic fibrosis and achondroplasia. It can also determine its sex.

The test is currently available in the UK through private hospitals and clinics, and in some NHS (ie, public) hospitals. Last year, the UK Government announced that from 2018, the NHS will offer NIPT to pregnant women who have been found through initial screening to have at least a 1 in 150 likelihood of having a fetus with Down’s, Patau’s or Edwards’ syndromes.

The report says that NIPT should lead to fewer false results and fewer diagnostic tests, which carry a small risk of miscarriage. In the case of Down syndrome fetuses, 200 more would be identified (with 90% or more being aborted) and 17 fewer miscarriages of healthy foetuses because of invasive tests.

In addition, the Nuffield Council calls for a moratorium on the use of NIPT in sequencing the whole genome of fetuses; it wants a ban on its use in finding out the sex of the fetus because that would lead to sex-selective abortion.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Peter Singer interviewed about, well, everything

The Journal of Practical Ethics recently posed 20 hardball questions to Peter Singer about his philosophy. It is a terrific insight into his thinking as his long career draws to a close.

About utilitarianism: Why do many intelligent and sophisticated people reject utilitarianism? Some people give more weight to their intuitions than I do—and less weight to arguments for debunking intuitions. Does that reduce my confidence in utilitarianism? Yes, to some extent, but I still remain reasonably confident that it is the most defensible view of ethics. I don’t know if everyone will accept utilitarianism in 100 years, but I don’t find the prospect frightening. It would only be frightening if people misapplied it, and I do not assume that they will.

On critics: There have been many critics of my views about euthanasia for severely disabled infants. I had some good discussions with the late Harriet McBryde Johnson, who was not a philosopher but a lawyer who had a rich and full life despite being born with a very disabling condition. As long as she was alive, when I wrote anything on that topic, I wrote with her potentially critical response in mind.

The objective truth of morality: You could just say “these are my normative views, and I’m going to treat them as if they were true, without thinking about whether moral judgments really can be objectively true.” If you do that, then in practice your decisions will be the same whether or not moral judgments can be objectively true. But given that I think morality is highly demanding, it becomes easier to say that, since morality is so highly demanding, and there is nothing irrational about not doing what morality demands, I’m not going to bother doing what I know to be right.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Clinic Claims It Has Used Stem Cells to Treat Down Syndrome

February 2, 2017

(New Scientist) – A CLINIC claims it has used stem cells to treat Down’s syndrome in up to 14 people. “As far as we know, it’s the first time that stem cells have been used to treat Down’s syndrome,” says Jyoti Titus, manager at Nutech Mediworld clinic in New Delhi, India. The announcement has set alarm bells ringing. It’s not clear to independent stem cell or Down’s experts how stem cells – which can form many types of tissue – might treat Down’s, a genetic disorder caused by having an extra chromosome. “The use of these cells does not make biological sense and may place the babies at considerable risk of side effects,”says John Rasko of the International Society for Cellular Therapy.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Gene Targets for in Utero Therapy in Down Syndrome: Potentials and Pitfalls

January 16, 2017

(News-Medical) – Sequencing of HSA21 revealed the presence of 364-protein coding genes on this chromosome. Fortunately, HSA21 is the smallest and among the poorest chromosomes in terms of the number of functional genes. Among the >300 genes, only a small number are expressed in the brain regions associated with learning and memory and have been linked to normal or abnormal functions in the nervous system. Normalizing the expression of a number of critical genes would be able to prevent a part of nervous system abnormalities in DS.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.