BS: Ethical unethical? Research on twins

Subject: BS: Ethical unethical? Research on twins
From: GUEST,Keinstein
Date: 04 Jan 08 - 06:14 AM

Twins were deliberately separated at birth in an experiment to determine the relative effects of inheritance and upbringing.

I find this very disturbing. I can't quite say why- clearly the two children involved had happy adoptive homes and have grown into well adjusted adults. But the notion of treating people as objects comes to mind, and the witholding of full information from them strikes me as needless cruelty and a bully's attitude to the wielding of power.

I think the psychiatrist involved needs a course in the basics of human morality, though it is probably too late by now. Any other views?

Subject: RE: BS: Ethical unethical? Research on twins
From: JohnInKansas
Date: 04 Jan 08 - 07:35 AM

While it makes a quaint story, and the report attempts to imply that the twins would not have been separated except for being made part of a study, the reality is that there's quite probably a healthy dose of "spin" in the report.

Twins are, as a rule, incredibly difficult to place for adoption with any assurance that they will be kept and raised together. It does happen, but it's quite common for them to be separated simply because it's the only way they'll find adoptive parents.

There has been sufficient interest in the relative effects of genetics and environment that any identical twins NOT ADDOPTED by a single set of parents would automatically be included in any database being kept by anyone interested in this kind of study.

It thus is true that these two were separated by adoption at birth.

It is NOT NECESSARILY TRUE that this was done "for the purpose of" some study. It is much more likely that it was done simply because it's harder to place two children with one family than to place them separately with two families.

It's also true that they were included in a study of "identical twins separated at birth" but that inclusion most likely was done after-the-fact of the adoption.

Change one sentence of the report:

They were given up for adoption to separate families as part of an experiment in the US to discover how identical twins would react to being raised in different family backgrounds.

to:

"Because they were given up for adoption to separate families, they were recorded as part of an experiment in the US to discover how twins would react to being raised in different family backgrounds."

Entirely different spin.

Until records of the "experiment" are revealed, and/or until the doctor provides his/her side of the story, I think I'll consider the more common - but less newsworthy - second construct much the more likely one.

John

Subject: RE: BS: Ethical unethical? Research on twins
From: lady penelope
Date: 04 Jan 08 - 07:59 AM

It's one thing to study twins that have by sheer chance ended up being separated, but quite another to seperate them deliberately simply to study them.

I too find this very disturbing. By the sounds of it, the mother was a psychiatric patient who became pregnant. At that time it was not unusual for the state to put the infants up for adoption in such a case and also it wasn't unusual for twins to be seperated, simply because adoptive parents were often unwilling to take two babies on at the same time.

But for the information of their birth circumstances to be deliberately supressed simply for the sake of a study - which apparently didn't even run for very long!! -is to me, highly unethical. The fact that the records have been sealed till 2066 also points out that this was all done with the connivance of the authorities.

To be brutally honest. I don't know what the two women were expecting from the psychologist who did this to them. He obviously had no problem with the initial decision, and I certainly wouldn't expect an apology from him any time this side of hell freezing over.

But I do think this merits investigation by the authorities. The whole thing sounds like a violation of human rights.

Subject: RE: BS: Ethical unethical? Research on twins
From: Rapparee
Date: 04 Jan 08 - 09:34 AM

Reminds me of the venereal disease experiments run on African-Americans or some of things down by the Nazis. Unethical AND immoral, if they were separated solely for experimentation.

Subject: RE: BS: Ethical unethical? Research on twins
From: JohnInKansas
Date: 04 Jan 08 - 09:56 AM

Once again, lady p, it has been the common and nearly universal practice among ALL ADOPTION AGENCIES in many areas to "seal the records" on adopted children. There is NO EVIDENCE GIVEN that this was done because these kids were being studied, or that any "special treatment of the records" was because of the study.

That was, and unfortunately IS in many areas, a very common practice.

In the case of one adoptee personally known to me, who found her birth mother within the last ten years when she was about the same age as these two are now, it was necessary for her to obtain a court order for release of the records in order for her to find any information on her birth parents. Inital requests for the required order were refused until she came up with a show cause statement to justify the release of specific information, since adoption records are NOT PUBLIC RECORDS in many places.

Invoking a fictitious "mad scientist" to explain why, in one case, the same thing happened that happens in nearly all similar cases, is simply "decorating the story" for the sake of sensationalism.

These girls may, themselves, have decided that "the psychiatrist" was "to be blamed" for "something." Especially in the case of someone who learns later in life that they were adopted, it can be very difficult to adapt to the new information, and unfounded or illogical blame placing is fairly common. The usual circumstances of such adoptive placements simply do NOT JUSTIFY the assumptions mostly implied without evidence in this story.

John

Subject: RE: BS: Ethical unethical? Research on twins
From: Amos
Date: 04 Jan 08 - 10:08 AM

Invoking a fictitious "mad scientist" to explain why, in one case, the same thing happened that happens in nearly all similar cases, is simply "decorating the story" for the sake of sensationalism.

I love the way this man turns a phrase.



A

Subject: RE: BS: Ethical unethical? Research on twins
From: mack/misophist
Date: 04 Jan 08 - 10:55 AM

1. Dr. Peter Neubauer doesn't sound very fictional. The twins got to meet him, after all.

2. Since personal health may be involved, refusing information could easily be unethical.

3. Sealing the records until 2066 makes it look as if there are questions Dr. Neubauer doesn't want to answer. Ever.

4. Over the last several decades, ethical restrictions on human psychological testing have gotten much more restrictive. Google Stanley Milgram to get an idea why.

Subject: RE: BS: Ethical unethical? Research on twins
From: Emma B
Date: 04 Jan 08 - 11:19 AM

Nancy L Segal's report about this social research including contempory discussions of the ethical situation can be found here on pages 1040 and 1041

'The New York Child Development Twin Study' published in Twin Reserch and Human Genetics Dec 2006

Subject: RE: BS: Ethical unethical? Research on twins
From: GUEST,leeneia
Date: 04 Jan 08 - 11:40 AM

There are a lot of people in this world who like to stir up trouble and get others upset, and the writer of the original article is one of them.

In other words, John In Kansas is right, as is so often the case.

Look at it this way. Picture a scene in a courthouse where twins are being adopted. We have the usual characters - judge, children, parents, lawyers. In walks a guy in a white coat. He says, "Judge, I want these kids split up because I may want to study them some year in the future."

And the judge says, "Oh, of course. We won't even ask how you got into this private proceeding."

===
I don't think so.

Subject: RE: BS: Ethical unethical? Research on twins
From: Greg B
Date: 04 Jan 08 - 11:56 AM

Dr. Peter Neubauer will become quite a controversial figure over
time. As someone whose degree is in psychology, I find his reticence
to be forthcoming with his subjects after the conclusion of the
study to be troubling. It suggests to me that he is attempting to
avoid scrutiny or even legal liability.

I also find it troubling that he is unwilling to make the claim
that the decision regarding their separation was a matter of
inevitable circumstance, not at the behest of his research. The
ethical rule is pretty much that 'You can study the lives of people,
but you can't materially alter their lives to study them, particularly
in what could be considered a negative fashion.'

If these twins were, indeed, separated in order to create the
conditions of the study, that's a real big ethical problem.

You can argue that they were deprived of the unique experience of
growing up twins, something which is irreplaceable.

On the other hand, you can argue that adults make decisions for
children all the time, some of which result in irreversible
changes in their lives. From circumcision to choice of schools,
such is the relationship between the adult and juvenile world.

Subject: RE: BS: Ethical unethical? Research on twins
From: katlaughing
Date: 04 Jan 08 - 11:57 AM

(I had first heard of this on NPR a few weeks ago. They do have their own website, also, fwiw.) My sisters are identical twins, as are my grandsons. I cannot imagine any of them living without knowing the other. Things to note from the article:

Neither set of adoptive parents knew the babies were part of a study or that they had been born twins. and,

it is the records of the study, not the adoption, which are sealed until 2066: And the records of the study are sealed until 2066. Also, I didn't find anything which said their mother was in psychiatric care when she gave birth, just that the twins have learnt that their birth mother did spend part of her life in psychiatric care.

When I was a teen, I met a woman who had twins. She and her husband split and decided to raise their daughters apart from one another, one child to each parent. The girls knew one another but were not raised as twins at all and they were identical. It seemed such a foreign concept to me then, it still does. I would be interested to know how they turned out, but I don't even remember their names. In their case a judge would have had to agree to the arrangement. I found the whole thing appalling in light of my growing up with my sisters.

As far as I am concerned, it is wrong to have done this. One of things which really bothers me about it is it wasn't that long ago. My son was born two years before these women. Think about it..in our recent lifetimes this took place.

Subject: RE: BS: Ethical unethical? Research on twins
From: katlaughing
Date: 04 Jan 08 - 12:35 PM

Another thing to point out, though it seems obvious, is the adoptive parents were not even given the option of adopting both of the girls. As noted above, they didn't even know the girl they each adopted was a twin.

Subject: RE: BS: Ethical unethical? Research on twins
From: Mrrzy
Date: 04 Jan 08 - 12:53 PM

I doubt this was done AS a study. If so, UNethical. But not if done post-hoc as is more likely.

The Tuskeegee study didn't involve white people.

Subject: RE: BS: Ethical unethical? Research on twins
From: Rapparee
Date: 04 Jan 08 - 04:24 PM

The Tuskeegee study didn't involve white people.

The Tuskegee Study involved people. What difference does their race make? Unethical is unethical.

Subject: RE: BS: Ethical unethical? Research on twins
From: Uncle_DaveO
Date: 04 Jan 08 - 05:00 PM

I'm the adoptive father of two "kids"--the quotes because they are respectively 43 and 38 years old now.

Before we ever got to the point (in either case) of knowing there was a particular baby available, in the early stages, we were given to understand that we would not be given any identifying information about the placing parent(s), and that the children would probably not ever be able to identify their birth parent(s). We were given only the most general facts--such as mother, 18, German ancestry, from a small town, in good health, high school graduate, and so on; father, 23, from a farming family, Scottish and Irish ancestry, in good health, one year college. Those details are fictitious, but representative of the sort of information given. Even the state from which the parent(s) came was withheld.

I don't know this for a fact, but I strongly doubt that we would have been given the information that this baby was one of twins.

This is the way it was done 43 and 38 years ago in Indianapolis, and the only quibble I have with this process is the paucity of information on the "good health", and none on the (possibly heritable) health conditions in the respective family lines--such as diabetes, alcoholism, and so forth. I understand and approve the confidentiality concerns, but I regret that we could not give our kids more details on their physical backgrounds.

We never made a secret of their adoptive status, and indeed pointed out to each of them that "You didn't just happen to us; we jumped through hoops to get you!"   Neither of the kids ever, I think, had any doubt of being loved, and neither (even after the law and rules loosened up) ever has shown any interest in seeking out their birth parents, even though we made it clear that if they did we would cooperate all the way, even to the extent of hiring a lawyer or detective to help in the effort.

Now, supposing that one (or both) of them was part of a twin-split, based on WHATEVER motivation on the doctor's part or the agency's part, I assert that that severed twin has not lost anything of substantive value by being split from another twin and not knowing it.

Dave Oesterreich

Subject: RE: BS: Ethical unethical? Research on twins
From: Emma B
Date: 04 Jan 08 - 05:16 PM

Things are very different with adoption now.

When I was in my early 20s a friend was only aware that she was adopted when she needed a birth certificate to get married.

This year I spent Christmas with my best friend, her 20 something adopted daughter and her two fostered half sisters who are a very real part of the family.

Some things do change for the better.

Subject: RE: BS: Ethical unethical? Research on twins
From: Rapparee
Date: 04 Jan 08 - 05:29 PM

I would like to know the point of the "study."

Subject: RE: BS: Ethical unethical? Research on twins
From: Greg B
Date: 04 Jan 08 - 06:01 PM

"You didn't just happen to us; we jumped through hoops to get you!"

Well--- thats a reasonable metaphor for the more conventional
method ;-)

Rapaire, the point of the many 'twins studies' are to make
'nature or nurture' determinations on any number of behavioral
and physiological traits. It is always done with identical
twins, who have identical genetic makeup.

One of the best cases-in-point is schizophrenia. For many many
years, indeed well into the 1970's, there was an ongoing 'nature
vs. nurture' debate about the condition. The 'nurture' camp insisted
that 'talk therapy' was the way.

Twin studies helped to demonstrate that there was a very strong
genetic predisposition to the condition--- if one twin suffers it,
there is a huge (I forget the number) increase in the likelihood
that the other one will as well. This, in turn, probably helped
encourage research on physical (i.e., pharmaceutical) remedies.
They now exist, and though they haven't cured the condition, it's
fair to say that treatment has been revolutionized.

They're valuable in determining physical disease proclivities as
well--- if you have twin studies that show identical twins raised
separately are many times more likely to have a given type of
cancer if their twin does, then you know to start looking for
some marker in the genome that's common to people with the cancer.
Because when they're raised far apart, it's less likely that you
can point to something in the water or air or food.

Subject: RE: BS: Ethical unethical? Research on twins
From: Uncle_DaveO
Date: 04 Jan 08 - 06:49 PM

Greg B, you said,
* * *"'we jumped through hoops to get you!'

"Well--- thats a reasonable metaphor for the more conventional
method ;-)"

Beautiful, Greg! I guess my mind just doesn't run in the right lines to have seen that coming! Touche!

Dave Oesterreich

Subject: RE: BS: Ethical unethical? Research on twins
From: katlaughing
Date: 04 Jan 08 - 07:34 PM

I don't think any of us is qualified to assert that that severed twin has not lost anything of substantive value by being split from another twin and not knowing it. Unless, of course, we are twins.

Subject: RE: BS: Ethical unethical? Research on twins
From: Janie
Date: 04 Jan 08 - 08:26 PM

The NPR story, http://www.npr.org/templates/story/story.php?storyId=15629096, has a bit more information on the circumstances.

These twins were part of a larger twin study (though they were apparently dropped from the study at some point while still quite young,) in which twins were intentionally separated by the adoption agency for the purpose of research. The study was ended in 1980, and the records of the study, (not the adoption records) are sealed until 2066. According to the NPR article, the study has never been reported on because Dr. N. recognized how controversial the separation of twins primarily for the purpose of research was.

While intentionally separating siblings (not just twins) for the purposes of research was ethically questionable even then, it is important to maintain a historical perspective, especially relating to adoptions in this country. The comments of Dave, especially, and of John are germaine to that perspective.

Keep in mind that not that many years ago, there were more healthy, Western born infants and toddlers in need of adoptive parents than there were adoptive families. It would be rare today for Western born twins placed for adoption to be placed separately, especially in infancy.    In fact, today, it would be rare for a healthy Western born infant voluntarily relinquished for adoption to not be adopted post-haste - most have adoptive parents waiting in the wings for the relinquishing parent to give birth.   And infants and very young children who are removed from parental care by child welfare agencies usually have adoptive parents waiting in the wings when parental rights are terminated - which happens much more quickly than it used to.   that is because there are many fewer healthy, developmentally normal, Western born infants and children available for adoption than there were 35 years ago.   The reasons for this are (in no particular order,) 1. The wide availability and accessibility of birth control in the West. 2. Legal abortion 3. Changed social mores that have substantially decreased, or even eliminated the 'shame' of having a child out of wedlock in the West, such that more teens and single women choose to keep and raise their out-of-wedlock children.

Going back to the title of this thread, there is nothing at all unethical about doing research on twins. The unethicity involved in this particular instance, is in the intentional separation of twins for the purpose of research.

Google "twin studies,' for information on the value of such studies, and to understand that the intentional separation of twins for research purposes was an aberration.

Janie

Subject: RE: BS: Ethical unethical? Research on twins
From: Emma B
Date: 05 Jan 08 - 06:08 AM

Also bear in mind that the adoption agency involved was a small, independent Jewish placement agency (described as a 'cottage operation') which was faced with two sets of twins for adoption at the same time.

It was the policy of the agency to place all babies in a family with another child and the biological mother's consent was required if twins were to be seperated.

On the board of this agency was Dr Viola Bernard who believed strongly that twins raised together shared an ego and genuinely felt that they would actually be better off if it was possible to raise them independently. Her advice to parents of identical twins was therefore to treat them as seperately as possible.

Even at the time of seperation there were dissenting views.

Not a straightforward 'ethical/unethical' debate - it can be very easy to look back at practices of 50 years ago and shudder. Maybe future generations will feel the same about our perspectives

Subject: RE: BS: Ethical unethical? Research on twins
From: GUEST,leeneia
Date: 05 Jan 08 - 05:30 PM

Here's letter to the London Review of Books
=====
Double-Dealing
From Peter Neubauer

Reviewing Lawrence Wright's book Twins, Wendy Doniger (LRB, 19 March) referred to my work and states that 'twins put up for adoption were separated and used for psychological studies.' This ambiguous phrase easily leads to the conclusion that the twins were separated so that a study could be undertaken. Wright's account makes it perfectly clear that it was the adoption agency that decided to separate them, following the belief at that time that twinship is a burden. The agency treated the twins no differently from other siblings, who were also separated into different adoptive homes.

It was only after I was informed about this policy that I organised a unique prospective study of these twins. Our focus was to explore the effect of environment on development. Doniger quotes one of the twins who remarks that 'this is nightmarish Nazi shit.' He, too, mistakenly assumed that he was separated in order to be studied, an assumption fashioned by the press to dramatise the issue.

Doniger states that neither the twins nor the parents were told that they were being studied. This is not true. It would not have been possible to visit them at regular intervals, to observe and test them, to interview parents without their knowledge. I have also never expressed the opinion that we were 'playing God'. This again was a statement made by members of the media.

Doniger writes: 'Why not just demonstrate that some factors owe more to nature, others to nurture, and leave it at that?' But this would impose an unacceptable restriction on research. It is the obligation of researchers to figure out the specific area of influence of both heredity and environment.

Peter Neubauer
New York University
=======
Speaking of heredity vs environment, of the twins Elyse and Paula, one is notably younger-looking that the other. Ten to one the aged one is the one who smokes.

Subject: RE: BS: Ethical unethical? Research on twins
From: katlaughing
Date: 05 Jan 08 - 06:16 PM

This wasn't fifty years ago; it was just thirty-some years ago. I am appalled that the age it occurred in be used for an excuse to understand it. My sisters were in their mid-twenties back then, so they were born well before that "era." Thank goodness for them and our family they were not consider more of a "burden" or "ego-sharing" and thus needing to be separated. I do believe it would have been better for them each to not always wear look-alike clothing and to have separate bedrooms, but we were a family of five children, so there was doubling up regardless and hand-me-downs were worn. I am just glad they were not torn apart regardless of any justifications listed above.

Subject: RE: BS: Ethical unethical? Research on twins
From: Janie
Date: 05 Jan 08 - 10:49 PM

Katmyluv,

I don't think anyone posting is trying to justify the separation of siblings, in general, much less twins. I also doubt anyone posting to this thread can not understand and validate the pain, loss, and feelings of betrayal these twins express. There was not, to my knowledge, an 'era' when it was generally believed that twins were better off separated. I don't know how many proponents there were of that school of thought.   While I think it likely that some adoption agencies preferred to keep twins (and other siblings) together if possible. I think it unlikely that a majority of adoption agencies at that time would have flat-out refused the adoption of one infant twin to an approved adoptive family in the absence of a family willing to adopt both.

There is a substantial difference in the body of formal, research-based knowledge, and understanding of attachment and bonding now, compared to 30 years ago.    30 years ago is half a light year in these infant biopsychosocial sciences. The substantial differences in adoption policy and practices from 30 years ago is one indicator of this. These thirty years represent significant historical contextual differences that should be taken into account before the general public demonizes the adoption agency, the psychologist on the board of the adoption agency, or Dr. Neubauer.

To have separated twins for the purpose of research would have been clearly as unethical 30 years ago as it is now. According to Dr. N's letter, the press, including NPR, have reported or strongly implied that twins were separated for the purpose of research. He says that was not the case at all, and the adoption agency was following it's usual practices, (those practices were probably not exclusive to that agency, though I don't know just how common that practice was among adoption agencies.)    Was the reporting of this as for the purposes of research a misunderstanding, or a deliberate distortion by the media in a successful attempt to sensationalize and create a sense of scandal?

With the benefit of hindsight, it is sad, even tragic, that twins were deliberately separated at adoption by that agency, and probably other agencies, thinking it was to the developmental benefit of each infant. It is, indeed, a shame. I am not a twin, nor am I adopted, but if I were, I can imagine the depths of feelings that might arise upon learning in adulthood that I had been separated from my twin. I would feel so very robbed.   I would want someone to blame. I would have those feelings, and many others, I am sure.

However, all information about family of origin was routinely withheld from all adoptees and adoptive families at that time, as Dave O. has indicated above. It was not withheld because they were twins, and it was not withheld so as to not taint research. This situation is not comparable to the Tuskegee Study. In my view, this should not be interpreted or treated as scientific research scandal. It is a terrible shame. It does not, however constitute a national scandal about the immorality or ammorality of the scientific community on a quest for knowledge at any cost.

Saying that does not take away from or in any way minimize the trauma to twins or other siblings separated and given no knowledge of the existence of the other.

Janie

Subject: RE: BS: Ethical unethical? Research on twins
From: Emma B
Date: 06 Jan 08 - 07:14 AM

The media reports have all been based on the much publicised recently published book Identical Strangers an account written by the twins themselves.

This is how the BBC reported the story as given in the book.

'They were given up for adoption to separate families as part of an experiment in the US to discover how identical twins would react to being raised in different family backgrounds.'

As Janie said, without in any way subtracting from the very real feelings of these sisters, 'I would want someone to blame'.

Subject: RE: BS: Ethical unethical? Research on twins
From: katlaughing
Date: 06 Jan 08 - 12:26 PM

Thanks, Janiedarlin'. :-)

I was mostly referring to a couple of things in Emma's earlier post, esp. this: On the board of this agency was Dr Viola Bernard who believed strongly that twins raised together shared an ego and genuinely felt that they would actually be better off if it was possible to raise them independently. Emma and I have PM'd about it. Thanks, Emma.

I realise there is more to it than the emotional factor which it sparked in me. I am glad these twins found each other.

Subject: RE: BS: Ethical unethical? Research on twins
From: Rowan
Date: 07 Jan 08 - 12:14 AM

Janie wrote "30 years ago is half a light year in these infant biopsychosocial sciences. The substantial differences in adoption policy and practices from 30 years ago is one indicator of this. These thirty years represent significant historical contextual differences that should be taken into account"

Trying to understand how/why things were done in the past is a longstanding discipline and, while 30 years ago is well within our memory span we sometimes forget details. Alhough this is serious thread drift, my fiancee and I had to postpone our marriage until the rules forbidding married women to be employed by the state public service were repealed.

30 years ago is half a light year in lots of social spheres, not just infant biopsychosocial sciences.

Cheers Rowan

Subject: RE: BS: Ethical unethical? Research on twins
From: Brendy
Date: 07 Jan 08 - 12:53 AM

Reminds me a bit of Skinner's Operant Conditioning studies.

B.

Subject: RE: BS: Ethical unethical? Research on twins
From: Wolfgang
Date: 07 Jan 08 - 09:14 AM

Survivors of Hiroshima and Nagasaki and people moving to these towns in the late fourties have been studied extensively to find out about the effect of low level radiation.

However, rumours that the A-bombs have been delivered only to make the research about low-level radiation effect possible are slightly exaggerated.

Newspaper articles outside of the science section about science and research are more often than not - wrong.

Wolfgang

Subject: RE: BS: Ethical unethical? Research on twins
From: Wilfried Schaum
Date: 08 Jan 08 - 02:34 AM

Twins can develop differently even if raised together.
When my unit visited the headquarters of our Federal Crime Investigation Service one of my friends asked to look him up. Only the family name and date of birth were stored, and he showed up wanted. Then he produced a paper saying that not he was the wanted one, the criminal was his twin brother. He got the paper because he was tired of always being arrested when he got into a police raid.

Subject: RE: BS: Ethical unethical? Research on twins
From: GUEST,Keinstein
Date: 08 Jan 08 - 04:23 AM

Interesting discussion, and it's good to see so many points of view put forward without rancour. But I still can't decide on my original query. There has been partial reporting- (over?) dramatisation against self- exculpation perhaps? The circumstances are not as clear cut as the BBC report suggested. So it might be better to recast it as a hypothetical rather than a specific case.

(1) Research on twins is a valuable method of determining the relative strength of genetic and cultural effects on development. This is useful because it can assist with educational and other social strategies. It's also dangerous because it can be used to justify preconceived social assumptions.

(2) Twins are a scarce resource, and still scarcer are identical twins who have been subject to different developmental experiences. Identical twins also have an unusual relationship to each other, in that they share exactly the same genetic basis. The part of their mind that is dependent on its hardware structure can be assumed to be much closer than other pairs of humans.

(3) Children have a right to the best upbringing that we can provide for them. This includes the physical situation, and also the non- physical environment ("spiritual" is the term often used, but it's best avoided because of its other religious connotations). There may well be a tradeoff between the physical resources available- parents can provide less for two than one- and the benefits (or as one psychologist is said to have claimed above, problems) of having another human being to whom you are uniquely close.

(4) To gain the benefits of studies of twins, they have to be studied, and to have statistical significance, the studies must include as large a nummber of subjects as possible. As this may well include intimate details of identifiabvle families, the privacy of those families must not be invaded unnecessarily. On the other hand, the individual subjects have the right to know what has been done to them and why. This could include an explanation, say, that the disclosure of the fact that they are a twin could render the results invalid (and a demonstration of that).

Do researchers make clear in their justification for a study the exact tradeoffs they have made in these dilemmas, and is there some publicly debated ethical standard by which it can be agreed that it is worthwhile?

Subject: RE: BS: Ethical unethical? Research on twins
From: GUEST,leeneia
Date: 08 Jan 08 - 05:39 PM

Let us keep in mind that the people truly responsible for the separation of the twins are their families, both maternal and paternal. Why did they reject two babies who were their own kin?

But an article about that would be real hard to write, so the reporter lazily goes after the agency and the researcher. They make much better villains.

Subject: RE: BS: Ethical unethical? Research on twins
From: Uncle_DaveO
Date: 28 Jan 08 - 06:24 PM

Leeneia, you make an assumption that doesn't necessarily flow from the facts given, "Why did they reject two babies who were their own kin?"

"Reject" is pejorative, and displays your own attitude toward the whole subject.

Dave Oesterreich

Subject: RE: BS: Ethical unethical? Research on twins
From: Janie
Date: 28 Jan 08 - 11:34 PM

Keinstein,

Research regarding twins is not different from any other research involving human subjects. (I'm not sure it makes any difference, but I am very unclear about whether you are wondering about all research involving twin studies, or only social sciences research.)

There are ALWAYS ethical considerations, and these days, some pretty rigorous hoops to jump through that directly explore and address those ethical considerations before any research project involving human subjects is approved and funded. That does not mean the system is fail-safe, but government and academic research is highly regulated and goes through a number of rigorous review processes. When actual or potential abuses are identified they are quickly addressed, and review processes quickly revised to try to prevent recurrences.   

Starting in 1992, I have worked with a number of clients and/or families who I either referred to, or who otherwise participated in, or were screened for participation in a number of research studies regarding a range of issues across the medical, psychiatric, and psychotherapeutic spectrum at Duke or UNC-Chapel Hill, two major research institutions.   The screening process before individuals are admitted to studies is quite rigorous, subjects are closely monitored to insure their health, safety or well-being is not being compromised, and the doctrine of informed consent is thoroughly and rigorously adhered to. In talking with both my clients and with the staff involved in these research studies, I am always impressed that patient care is the first and foremost concern of the assorted clinicians involved in these studies, whether they be MD's, Psychologists, Nurses, or Social Workers. I am not saying that being the subject of research does not pose risks, nor am I saying that there is no potential for abuse. But there is a great deal done to try to protect from that occurring.

Google 'research on twins' and you will find of wealth of links that may help you answer your questions.   You will find a full range of links from recruiting announcements to study conclusions across a wide range of research involving twins.

Janie

Subject: RE: BS: Ethical unethical? Research on twins
From: Janie
Date: 28 Jan 08 - 11:46 PM

leeneia,

The decision to relinquish a child for adoption is extremely difficult and painful to make for the vast majority of parents. It can best be understood as a supreme sacrifice that a parent (usually a single mother) makes on behalf of the child. Some parents have their parental rights terminated after they have been legally determined to be unfit - because their children have been seriously abused and/or neglected. I've worked with a number of these parents. Even though they may be appalling parents, losing their children is heartbreaking to them.

Janie

Subject: RE: BS: Ethical unethical? Research on twins
From: GUEST,Janie
Date: 29 Jan 08 - 09:35 AM

A possible example of withholding information on research results. In this instance, on the part of FEMA. Not enough info to know how to evaluate the news story.

Government Sponsored Research