“Saviour Siblings” vs “"Whoops I did it again" Kids: Any Ethical Difference?

From BBC News, here is story of what a family in Minnesota did in 2000 to save their daughter from a fatal illness.

"A test-tube baby has been selected by doctors using controversial genetic screening to save the life of its older sister.
Already questions are being raised about whether the baby boy was really wanted or merely 'created as a medical commodity' to save his sister.
Doctors genetically tested the embryos of an American couple before implanting one of them in the mother's womb.
They chose the embryo that would have the exact type of cells needed to save the couple's six-year-old daughter, who is suffering from a life-threatening bone marrow deficiency."

Stem cells were taken from the resulting boy to be given to his sister to restore her damaged bone marrow.

A similar case in California in the early 1990s involved a daughter born, after genetic selection to be a bone marrow donor for her leukemic sister. Such children born to donate to their siblings are called “saviour siblings”. There, obviously, is controversy whether it is ethical to analyze a number of parental zygotes, find the appropriate one and then implant it in the uterus, anticipating the birth of a child who can donate cells to their sick sibling. Some wonder if this amounts to bringing only a "commodity" into the world. There is nothing in these stories about ‘saviour siblings” suggesting the new child is ignored or unloved.

An ethicist writing on a bioethics listserv wrote the following recently:

"Personally, I think I would have been a lot nicer to my younger brother
if I'd known he saved my life.

As to the charge that a child conceived and/or selected for this purpose
would be loved less, we don't interfere in parental reproductive
decision-making that is motivated by far worse motives. Nor is there any
evidence that saviour siblings are any less loved. In fact, I suspect
that once we have a sufficient number to study, we will find that these
kids, like the kids of IVF and ARTs in general, have better and more
attentive parent-child relations than the ‘whoops I did it again’ kids."

I wonder what my visitors think about the ethics of this practice and particularly if there should be any concern about the parental love and attention of these “saviour siblings” And what if more than just cells or bone marrow is to be donated but actual organs or parts of organs? . ..Maurice.

ADDENDUM 6-5-2008: After reading this thread, you may want to go to a thread begun on this date which discusses the issue of the adoption of a child to serve as an organ resource.

Criminal Punishment: Does It Include Denial of Scarce Medical Resources?

A nursing student wrote me the following: "This reason for my e-mail is we are having to do a Ethical Presentation and our group has the Ethical dilemma of 'Should Scarce Medical Resources Be Used On Prisoners'? I was wondering if you or someone else had some information they would like to offer to us as research or questions that would be good to ask our fellow classmates while presenting this information to them to get their feedback and opinions on this matter that we are faced with on an everyday basis."

I wrote her back the following:
"One issue that should be discussed is whether the courts or even the U.S. Constitution would permit punishment of criminals to extend beyond incarceration to the denial of a prisoner the same possibility of healthcare as any other person. I doubt it. For example, a prisoner deserves the same opportunity for a life-saving organ transplant as any other patient. The same considerations should be applied including the probability of benefit including the absence of other diseases or conditions which would limit the value of the transplant and the capacity of the patient to follow through on the essential lifetime post transplant medical management. Best wishes on your presentation."

My question to my blog visitors would be: does everyone agree with my reply. If not, why not. In addition, are there any other issues that should be covered by the nursing student in her presentation regarding the use of scarce medical resources on prisoners? ..Maurice.

"You're Sick, We're Quick":Store-Based Clinics

Have you had a medical checkup at a CVS pharmacy yet? You probably won't see a physician there. A nurse-practitioner or physician's assistant will do the examination. What they can do and diagnose will be limited but you won't need an appointment, just walk in. Does anyone want to talk about the ethics of the commodification or is it commercialization of medical treatment in the form of the store-based "convenient care" clinics? Read the pdf file of the research regarding this form of healthcare by the California HealthCare Foundation. To me the ethical issues include "who owns the! patient"? "what are the standards of care?" "how is patient information shared and privacy protected?":"does a pharmacy which has a clinic within its walls have any conflict of interest with regard to the sale of medications?" You probably might find more issues. ..Maurice.

Thai Dictionary of Medical Ethics:New Clarity in Ethics

There are many words ethicists and the other people use that are part of our current medical ethics communication whose meanings are, well, unclear? disputed? needing of a more strict definition to prevent unnecessary ethical conflicts both in theory and practice. Well, what we have here may be a solution to the problem.

Steven Miles, MD,Professor of Medicine and Geriatrics,Center for Bioethics,University of Minnesota, while wandering around Bangkok..well, I don't have to describe it all myself since you can easily read the details below by Steve. The main point is that he had the academic curiosity and ethical interest to get a book he bought, A Thai Dictionary of Medical Ethics, translated from the Thai language into English. The difficulties in translation are also described below.

Well, Steve, knowing that the many ethicists participating on a bioethics listserv would find this dictionary a treasure, posted it recently on the listserv. I, too, was impressed by the directness, straigtforwardness and clarity of the definitions and thought this would be a great educational tool for the visitors to my blog. Therefore, with Steven Miles permission, I am doing just that. Thanks Steve. ..Maurice.
_______________________________________________

A Thai Dictionary
of Medical Ethics

Translated by Steven Miles

Preface

Recently, after a twenty-hour flight to Bangkok, I found myself walking down a street and, seeing an interesting sign of the mortar and pestle, turning into an alley and then into a small durian-smelling herbal apothecary not far from Chonpatmongkuhnrai-kroenkapsukkahpongkongthaikrup University. A ceiling fan listlessly stirred the monsoon damp air. While perusing the curiosities, I spotted a small well-thumbed Thai dictionary of medical ethics terms that I was able to purchase for a few baht. On the way out the door, the grateful owner gave me a gift of a small plastic bag of some dried herbal powder which he assured me would give me even greater vigor.

The title page and original preface are missing. I do not know the publisher, intended audience, or compiler. The book, despite being well worn, appears to be recent. The author seems to have an imperfect command of idiomatic ethics.
At my hotel, I enlisted the help of a perplexed and inexplicably disappointed translator. Our incomplete ability to communicate in Thai-English was imperfectly bridged with pantomime in the style of classic Thai dance. I apologize for any translational errors that may have resulted however I did want to get this unusual medical ethics work to the audience it deserves.
S. Miles
Bangkok
Jan, 2007



A-C
Abortion n.
the most common and morally controversial procedure in the United States and therefore not discussed by medical ethics except when prefixed with sex selection-, reduction-, or late-term-, etc.

Advance directive n.
not an advanced directive.

Autonomy (respect for) n.
When added to dying, makes comfort food.

Best Interest Standard n.
A flag (often red except to color blind).

Comfort food n.
discussions about ethics of dying. Has not advanced since 1981 so it is readily prepared, served, recognized and digestible.

Confidentiality n.
the tiny residue of information that is left after the essential waivers are signed, databases are linked and lies are accepted.

Cross (Blue) n.
tranquility colored crucifix for afflicting the medically indigent. See Indigence (medical).

D-F
Dead adj.
like porn, common, hard to define, easy to recognize.

Decisionmaker (surrogate) n. a worry approved articulator of best interest or substituted judgment.

Difficult patient n.
generally, the voltage generated by the difference between an ill, fearful disabled person whose life and loved ones are at risk of being financially destroyed by a disease and the clinicians or worry that is discussing that person in a lounge or committee room.

Disability activist n.
A suspicious and inexplicably hostile group of outsiders.

DNAR n.
See DNR.

DNR n.
See DNAR.

Ethics committee n.
an officially recognized worry. See Worry.

Ethics n.
See Moral.

Ethics (clinical) n.
a doughy deep dish Chicago concoction distinguished from ‘medical ethics,’ a traditional Ameri-canized continental fare.

Fairness adj.
the disposition and coloration of most medical ethicists.

Forego v.
a gang spelling of forgo (like Yippie spelling of Amerika)

Futility n.
a siphon for removing puddles of water that form far ahead on highways on hot summer days.

G-I
Indigence (medical) adj.
the state of having an enhanced right to forego treatment.

Informed consent n.
1. a clinical ritual in which two parties with different knowledge and biases speak two languages to create the illusion of choice and a shield from legal action. 2. a form of self governance which, like Churchill’s democracy, is better than all the alternatives.

IRB n.
a specialized and officially recognized worry.

J-L
Jehovah’s Witness pn.
a stick figure in a comfort food forego treatment discussion—not to be confused with a person belonging to the Church of the Seventh Day Adventists.

Judgment (substituted) n.
like salt substitute.

Justice n.
too hard.

Kant pn.
German monolith believed to be an astronomic observatory. It is covered with arcane text that is as routinely cited as it is rarely read. The traverse of its shadow is reputed to reliably point in the right direction.

M-O
Malpractice v.
failing to act with the care and skill of an ordinary practitioner in similar circumstances; i.e. a physician, but not a medical ethicist, can commit malpractice.
Medical disparities n. see Justice.

Moral adj.
conforming to general and mutable standards of right. Having the quality of general expediency (Ambrose Bierce).

Nazi analogy n.
a slippery slope argument that is a high card or low card (like an ace in blackjack [and all slippery slope arguments] except that its point value is assigned by the opponent, not the person playing it.)

P-R
Placebo n.
a treatment of proven no value that is ethically distinguishable from widely used treatments of no proven value.

Principle n.
a right that is not attached to a body. See Right.

Privacy (right to) n.
principle to be respected by everyone except medical ethicists discussing Teri, Nancy, Ashley and Karen and their families.

PVS n.
a rare clinical condition which seems to mimic a Cartesian mind-body dualism and which therefore is of immense importance to medical ethicists at the Academy of Legado.

Right n.
a principle that is attached to a body. See Principle.

Research (corporate sponsored) n. an oxymoron that makes money for academic health centers.

S-U
Science n. [from scientia-to know]
1. a body of knowledge obtained by empirical observation, experimentation, and logical reasoning. 2. revealed truth. 3. a political narrative composed to win friends and influence people. 4. a triangulated midpoint between facts, native beliefs and aspirations, media gullibility, and political machinations.

Snowflake n.
a frozen baby, adoptable.

Stem cell n.
a totipotent cell that can really be anything it is perceived to be e.g., cell, baby, vulnerable citizen, or precursor to Brave New World or Fourth Reich.

Ted Williams pn
a frozen baseball player, nonadoptable.

Trans-human n.
contraction of transitional (outgoing) human, e.g., Barry Bonds, Michael Jackson, Pamela Anderson or less.

TRIPPS n.
see Justice.

Twins (Conjoined) n.
Human curiosities discussed by medical ethics for their scientific and ethics educational value.

Twins (Siamese) n.
Human curiosities exhibited by PT Barnum for their scientific and ethics value.

Ulysses Contract n.
a bondage fantasy.

Uninsured n.
a group of United States citizens that is 25 times more common than the group of dying persons and which receives 1/25 the amount of medical ethics attention. See Justice.

Universal health care n.
an ideal in United States usage; an imperfect working reality in other developed nations.

W-Z
Worry n.
a minion of medical ethicists (coined by Ruth Macklin)

Yuk factor n.
no apparent meaning, may be derived from yuck (an expression of disgust) or yuk (a Bronx laugh).

The Ashley Case and What is Ethical?

You have probably been reading in the past day or so about Ashley. From the Website for Ashley, the following:

“Our daughter Ashley had a normal birth, but her mental and motor faculties did not develop. Over the years, neurologists, geneticists, and other specialists conducted every known traditional and experimental test, but still could not determine a diagnosis or a cause. Doctor’s call her condition “static encephalopathy of unknown etiology”, which means an insult to the brain of unknown origin or cause, and one that will not improve.
Now nine years old, Ashley cannot keep her head up, roll or change her sleeping position, hold a toy, or sit up by herself, let alone walk or talk. She is tube fed and depends on her caregivers in every way. We call her our 'Pillow Angel' since she is so sweet and stays right where we place her—usually on a pillow.”

The family decided, after research, consulting with specialists and after approval of an institutional ethics committee, to institute a series of procedures to make life more comfortable for Ashley in the future. Continuing on with the website narrative: “The “Ashley Treatment” is the name we have given to a collection of medical procedures for the improvement of Ashley’s quality of life. The treatment includes growth attenuation through high-dose estrogen therapy, hysterectomy to eliminate the menstrual cycle and associated discomfort to Ashley, and breast bud removal to avoid the development of large breasts and the associated discomfort to Ashley.” You must read the full website at the link above to understand the facts and the rationale for what was done and for what motivation.

Of course, this case has suddenly raised a huge amount of controversy in many areas and in one area in particular, those activists who want to encourage appropriate as well as ethical treatment for the disabled. Here is a statement released today by Not Dead Yet, a national disability rights group. Please read their statement and also Ashley’s website and hopefully comment on my blog what you think about the family’s decision if the facts and information on the website are correct (which I am assured by someone close to the case that it is). ..Maurice.
++++++++++++++++++++++++++++++++++++++++++
For Immediate Release:
January 6, 2007

Contacts: Diane Coleman or Stephen Drake



Not Dead Yet Statement on “Growth Attenuation” Experimentation

Not Dead Yet, a national disability rights group dealing with medical
and bioethics issues involving euthanasia, reacted today to the public
debate about the so-called “growth attenuation” invasive medical
experimentation performed on a young girl in Washington State.
These procedures rendered her sterile, prevented any sort of puberty
and will keep the girl the size she is now for the rest of her life.

“We are saddened but not surprised by the fact that this was publicized
and met with a great deal of public approval,” said Diane Coleman,
founder of Not Dead Yet. “The public is willing to sanction the murders
of disabled children by their parents, so it’s hardly surprising they would
rush to the support of parents and their medical partners in a matter like this.”

Coleman points out that the series of surgeries and drug regimens would
never have been given to a nondisabled female for any reason.

But more of these practices are threatened. When a report of the
Washington case was published in the Archives of Pediatric and
Adolescent Medicine, some so-called critics of the procedures said
the only way we can “evaluate” the outcome is to do more “research,”
which we presume to mean more experimentation on young women.
“That’s unacceptable,” said Coleman. “We simply need to call
a halt to it.”

Stephen Drake, research analyst for Not Dead Yet, is not surprised
to hear there were medical professionals willing to perform such drastic
measures on a young girl.

“As a child, I had many health problems that continued until the age
of 12,” said Drake. “By the time I was 11 or 12 I was feeling good
enough to worry about other things, like my height (Drake is 5’ 1”).
I was tired of always being the shortest guy in my class and feeling
bad around it. My parents took me to a specialist who determined
that my health issues probably had depressed my growth and
mentioned the possibility of growth hormone. My parents vetoed
the idea, since I was finally happy and healthy. They figured I didn’t
need any new unknown health risks introduced into my life.
They were right and it didn’t really take me long to see it their way.”

Not Dead Yet calls for a total ban on this procedure and similar ones,
no matter what ethics committees think of them. Ethics committees
are not a substitute for the constitutionally-guaranteed right of due
process. In fact, they often act as an end-run around those protections.
“Ethics Committees often say they strive for diversity in their membership,
but they have historically excluded representation from the disability
community about whom they are making life and death decisions,”
said Coleman.

###

Not Dead Yet
7521 Madison St.
Forest Park, IL 60130
708-209-1500
http://www.notdeadyet.org

Willful Ignorance: When Is It Acceptable?

Willful ignorance is the conscious intent of a person to avoid obtaining information about a matter. The issue is: What do you see is the significance of willful ignorance in medical practice? There are some interesting aspects of this question based on whether the willful ignorance is on the part of the patient or on the part of the physician. For example, do you ever think it is reasonable for a patient not to want to be told the results of a test or given a diagnosis or a prognosis about an illness or details about treatment? If so, under what circumstances?

Do you ever think it is reasonable for a person to refuse to be tested for a genetic abnormality.. if the person is healthy? ..if the person already has a disease that can have an associated genetic abnormality such as breast and ovarian cancer but the results of the test might be of significance to the health of family members? Or what about a family member who does not wish to know the results of a genetic test on another member? If the results of any test could have medical significance to the health of some other individuals, should the test be performed even if the person to be tested refuses to be told the results or even be tested?

Do you see any reason why a physician’s willful desire for ignorance regarding some aspect of his/her patient’s history or physical exam or test would have ethical merit or be professionally acceptable? For example, if a physician knew that the results of a test that the patient requested would most likely provide a result that would be ambiguous and if abnormal would only lead to additional procedures which, in the long run, would not be beneficial for the patient, that physician would desire ignorance (remember, it is the physican’s duty to interpret the test) and refuse to perform the test. (An example might be performing a PSA test to screen for prostate cancer in an 85 year old man.) Would that be ethical?

Well, what do you think? ..Maurice.

Shouldn’t Rights for Medical Care Be Proclaimed Universal?

Read what Vancouver psychotherapist Isabella Mori wrote on her Change Therapy blog regarding a recent publication of a bill of rights, part of the World Wide Charter for ACTION on Eating Disorders sponsored by the Academy for Eating Disorders. After reading the document that defines the rights applying to those patients and caregivers of those patients with eating disorders, I responded to Isabella’s blog with the following. Would any of my visitors disagree with my analysis? ..Maurice.


Maurice Bernstein, M.D. Says:
January 1st, 2007 at 11:34 am


Though I have no doubt that much could be improved in the clinical and social management of eating disorders, I wonder if it is necessary to isolate the particular entity of eating disorders and setting really non-specific rights to those who suffer with this pathology. I didn’t see anything in the Bill that couldn’t be applied and should be applied to a whole host of medical conditions including simply the overall ethical practice of medicine by physicians, other healthcare workers and society in general. I feel the health care system should attempt to provide ethical treatment to all classes of illnesses, including those bearing major psychologic components.

The problem of selecting groups to champion rights is to ignore the entire picture of medical care. An analogy would be what is happening in the bioethics community. There is much discussion amongst ethicists about individual bedside issues such as when to terminate life support or what to advise regarding a brain dead pregnant woman but containing a live pre-mature fetus. But where is the widespread discussion and emphatic ethical education of the politicians and public about the inadequate access to medical care for all peoples in the United States but also in countries throughout the world? Rights to proper medical management should be available to all groups (that’s the ethical principle of justice) and not just to those with eating disorders. ..Maurice.