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Developments in science, medicine, technology, and public policy can have notable impacts on people born with Harry Benjamin Syndrome (HBS).
TS-Si.org regularly reports on surveys of relevant public opinion and technical practices, informing the research community and public decision-makers of your views.
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The Human Genome & HBS
Individuals born with Harry Benjamin Syndrome (HBS) present a unique opportunity for researchers to assess the existence and implications of an interesting and persistent birth condition.
In light of previous work on decoding the human genome and the emergent 1000 Genome Project, study of the HBS population can illuminate the origin of HBS and its treatment, while offering a useful baseline when assessing other medical variations detectable via genomic studies.
This summary offers general information on HBS and presents an informal declaration of an interesting study opportunity worthy of consideration.
Background. Harry Benjamin Syndrome (HBS) is a medical condition that develops before birth, resulting in a misalignment between an individual’s innate brain sex and physical anatomy. For example, such a person is neurobiologically female but exhibits male sexual anatomy. The same is true for neurobiological males with female externals. The HBS designation progressively supersedes the traditional and less precise terminology (such as transsexual or transsexuality).
HBS is a prior condition for those who have successfully corrected their physical anatomy and brought it into alignment with their brain sex. Following transition, such individuals are no longer HBS.
Current Situation. Men and women with a history of HBS are a unique — but virtually unutilized — resource for research studies. Men with HBS histories are unencumbered with long-term exposure to testosterone prior to transition. HBS women do not have menstrual histories and are non-menopausal.
Both HBS men and women exhibit the measurable consequences of hormone therapy (HT) and related medication.
Even though women with a history of HBS have never been through menopause, doctors, endocrinologists and other medical practioners still use traditional practice and deny the appropriate types of estrogen and sufficient dosages to their M2F patients when prescribing hormones.
This practice derives from studies of women who have been prescribed hormone combinations with known deleterious effects and projecting those effects to all estrogen-inclusive regimens.
This is a biased practice based on uninformed presumptions that such patients seek pretense and can not be considered as females and males in their target anatomical configuration. Much of the confusion derives from a failure by practitioners to distinguish between HBS and paraphilia.
However, the existence of the post-op HBS-born offers the opportunity for informative baseline comparisons when studying the unique health concerns of all men and women, HBS or not.
Problem. There is no empirical method or established neurobiological markers that accurately identify Harry Benjamin Syndrome (HBS fna transsexuality). Current protocols rely on self-identification and psychological evaluation.
An empirical and replicable method of identification is needed to confirm the HBS diagnosis.
Hypothesis. The HBS genome is identifiable and sufficiently distinct to accurately confirm the HBS diagnosis. Current technology and methods offer the opportunity to confirm or disprove the HBS hypothesis.
Method. By making baseline comparisons between the genomes of directly comparable populations, genomic variations can be observed, catalogued, and compared.
Constraints. The study groups should be recruited and managed to minimize the variable effects of both (a) sexual orientation and (b) self-diagnostic anomalies. To that end:
1. All HBS subjects will be post-operative, with a history of confirmable participation in formal medical protocols prior to their corrective surgery. Pre-op HBS subjects are excluded from initial studies to minimize the possible effects of self-diagnostic bias.
2. The sexual orientation of all subjects will be confirmably heterosexual to minimize the possible bias of a mixed population. The sexual orientation of HBS participants will be assessed from the perspective of their sex following corrective surgery.
Study Design. The proposed approach consists of the following elements.
1. The genomes of a subject group of 200 post-operative HBS patients will be examined. The group membership will be evenly distributed between HBS females (male to female) and HBS males (female to male). The results will be examined for their areas of commonality.
2. The genomes of a subject group of 200 non-HBS heterosexual patients will be examined. The group membership will be evenly distributed between females and males. The results will be examined for their areas of commonality.
3. The genomes of the HBS females and males will then be compared to the genomes of the non-HBS females and males to identify possible areas of commonality.
Predictions
1. The genomes of HBS females will most closely resemble the genomes of non-HBS females;
2. The genomes of HBS males will more closely resemble the genome of non-HBS males;
3. The genomes of HBS females will more closely resemble the genomes of non-HBS females than the genomes of HBS men;
4. The genomes of HBS males will more closely resemble the genomes of non-HBS males than the genomes of HBS women.
— TS-Si
Stem Cell Science & Ethics. Opponents of embryonic stem-cell research have objected to two basic scientific techniques: harvesting stem cells from 5-day-old human embryos donated by fertilization clinics and creating human embryos using either somatic cell nuclear transfer (SCNT), replacing the DNA in an egg with DNA from another organism, or in vitro fertilization. In all cases, the embryo is ultimately destroyed.
Opponents have maintained that scientists should abandon research that destroys embryos and redouble their efforts in other medical research fields, such as non-controversial adult stem-cell studies. Adult stem cell research involves stem cells found in only certain human tissues — blood, umbilical cord blood, and bone marrow — that have the capacity to regenerate only the tissues from which they originated.
Scientists argued that adult stem-cell research was no substitute for embryonic studies, because the undifferentiated cells in embryos had the unique capacity to develop into pluripotent cells that can make up any organ tissue in the body. In recent research, scientists created what they say appear to be pluripotent cells by coaxing or “reprogramming” adult skin cells to revert to an embryonic stem-cell-like state referred to as induced pluripotent cells. The new skin-cell technique produces stem cells with the same DNA as the donor, and some scientists believe it renders SCNT moot.
In 1998, a team lead by James Thompson at the University of Wisconsin (UW) was the first to successfully harvest pluripotent stem cells from embryos donated by fertilization clinics. Since then, scientists have developed some 400 embryonic stem-cell lines using private and public research funds. Thompson’s lab houses the majority of federally-approved stem-cell lines and his skin-cell research — considered non-controversial from the outset. The lab was funded in part by the US National Institutes of Health (NIH).
In addition to avoiding the ethical controversy over creating and destroying embryos, scientists point out that further refinements to the the new technique may avoid the cumbersome process of acquiring donated eggs and embryos.
Bilbao, Spain. Most scientific and technological advances tend to take their place silently in society until general awareness reaches a critical level (usually after the fact). Biotechnology often finds itself the center of public debate and regulatory attention from the start, due partly to the moral issues posed by many of its applications. Stem cell research is one example, garnering extensive comments and debate by by public officials and pundits from many corners of society. But what do ordinary citizens have to say on the subject?
In the Second BBVA Foundation International Study on Attitudes to Biotechnology, the BBVA Foundation performed an in-depth comparative analysis of the attitudes of citizens towards research with embryos for the purpose of obtaining stem cells. Survey respondents were drawn from 12 European countries plus Israel, Japan, and the United States.
Second BBVA Foundation International Study on Attitudes to Biotechnology: Stem Cells.BBVA Foundation Social Studies Department. May 2008.
[ Download PDF ]
Among the questions analyzed the extent to which public opinion has been informed about stem cells, expectations and reservations regarding research with embryonic stem cells, and — depending on the origin of the embryos — any differences in support for such research.
Sample selection and methodology
The first BBVA Foundation study on Attitudes to Biotechnology was done in 2003. The initial sample of the first study has been enlarged from nine to twelve European countries (Austria, Czech Republic, Denmark, France, Germany, Ireland, Italy, Netherlands, Poland, Spain, Sweden, and the United Kingdom), with the addition of countries from other continents: Israel, Japan, and the United States. The selection of countries was informed by both their demographical weight and their variability from the standpoint of religious beliefs and cultural traditions.
Information was gathered through 1,500 face-to-face interviews in each country with subjects aged 18 and over (around 22,500 interviewees in all) conducted between April 2007 and February 2008. The design and analysis of the survey were the work of the Department of Social Studies and Public Opinion of the BBVA Foundation.
The second study in the series centers on attitudes towards one biotechnology application: research with embryos for the purpose of obtaining stem cells. In particular, it analyzes how far public opinion is informed about stem cells, expectations and reservations regarding research with embryonic stem cells and differences in support for such research depending on the origin of the embryos used. Attention also goes to the attitudes held on the creation of hybrid embryos for stem cell research.
Public understanding of the nature of stem cells
The data show that the percentage of the population that admit having heard or read anything about this kind of cell was notably uneven across the survey countries. In terms of basic awareness (they heard or read about stem cells):
over 70% in Sweden and 86% in Denmark,
between 70% and 75% in the Netherlands, United Kingdom, and United States,
over 55% in the Czech Republic, France, Germany, Ireland, Italy, and Spain, with
less than 45% in Poland, Austria, Israel and Japan.
As well as information about stem cells, the survey enquired about how far citizens understood the properties of such cells and the procedures used for obtaining them. The results point to a moderate understanding of stem cell properties:
surpassing 50% in seven of the fifteen countries,
between 40% and 50% in another four, and
below this threshold in the four remaining (Austria, Poland, Japan and Israel).
In contrast, people had a poor understanding about how stem cells are extracted and the consequences for the embryo, with percentages
no higher than 30% in the United States,
between 15% and 20% in a further six countries, and
lower still in the remainder.
Views about research with stem cells
In most societies there is a broad consensus around the usefulness of research with few-day-old human embryos in order to obtain stem cells. The mean agreement score with the idea that such research is very useful stood higher than the midpoint (5 on a scale from 0 to 10) in all countries except Austria, and was upwards of 6 points in nine of the fifteen countries, with Denmark and Sweden out in front.
But this overall perception of usefulness does not rule out feelings of risk or moral dilemmas. Hence the data show considerable reservations about the risks entailed by researching with human embryos that are a few days old for the purpose of obtaining stem cells. There is general disagreement with the idea that this application poses no serious risks, with mean agreement scores below the midpoint (5) in eleven of the fifteen countries. The citizens perceiving least risk are the Danish and the Dutch, with Austrians, Americans and Japanese lined up at the other extreme.
The moral or immoral nature of the application meets with divided opinions among survey countries.
The majority view in Austria, Germany, Israel, Japan, Poland, and United States is that this kind of research is immoral (mean agreement score above the midpoint on the scale),
those most strongly disagreeing with this supposed immorality are the citizens of Denmark, Italy , Spain, and the United Kingdom (mean agreement score below the midpoint), while
opinions tend to cluster round the midpoint in the remainder of countries.
Possible medical benefits
Debate and regulations regarding research with embryonic stem cells try to weigh up the medical benefits that may be obtained in future (the end pursued) against the moral reservations felt about this kind of research (the means utilized).
When the possible medical benefits deriving from stem cell research are opposed in abstract terms to the rights of the embryo, opinions are divided both between and within countries:
In the Czech Republic, Denmark, France, the Netherlands, Spain, and Sweden, the balance leans to a greater or lesser extent towards the side of medical benefits. Hence the majority agree with the statement that
the medical benefits for many human beings that can perhaps be obtained in the future thanks to research with embryos that are a few days old are much more important than the embryos' rights.
In Austria, Germany, Ireland, Israel, Japan, Poland, and the United States, the balance inclines more or less (depending on the country) towards the rights of embryos: that is, a majority dissent from the idea that
the medical benefits for many human beings that can perhaps be obtained in the future thanks to research with embryos that are a few days old are much more important than the embryos' rights.
The balance is more centered (mean value of 5) in Italy and the United Kingdom.
When the potential medical benefits are spelled out as treatments for what are seen as serious diseases (Alzheimer's, diabetes, or Parkinson's), a majority in all countries declare themselves in favor of such research. The mean agreement with the assertion that
research with stem cells from embryos that are a few days old should be supported as a means of finding effective treatments for diseases such as Parkinson's, Alzheimer's or diabetes as soon as possible
was above the midpoint in every country with the exception of Austria, and exceeded 6 points in nine cases, with Spanish and Czech citizens agreeing most strongly.
Besides moral objections, this kind of research meets with other reservations to do with ideas of what is natural or unnatural and concern about interfering with or altering the balance of nature. Citizens in most of the survey countries tended to agree that
research with human embryos that are a few days old is an unacceptable interference into the natural processes of life,
with agreement firmest in Austria, Germany, Israel, and Poland.
There is also widespread concern that this kind of research may lead to other more dubious uses. The idea that
allowing research with embryos that are a few days old in order to obtain stem cells for use in medicine will open the door to other morally reprehensible uses
meets with considerable approval even in the countries favorably disposed to this application. The consensus round this view is especially marked in France, Germany and Japan.
At the same time, research using embryonic stem cells touches on the moral or ethical framework of each individual. In this sense, moral criteria of religious inspiration are a key explanatory vector. In a context of plural opinions, the data show that
the dominant view of the moral condition of the few-day-old human embryo is that it is close or identical to that of a human being.
The strictly biological view finds widest support in Denmark and Sweden, where opinions are more equally distributed between those believing it makes no sense to talk about a moral condition of the embryo and those seeing it as close or identical to a human being.
The view of the embryo as close or identical to a human is most frequently expressed in countries such as Austria, Germany and the United States.
In Spain, opinions are quite sharply divided:
27% state that it makes no sense to talk about the moral condition of an embryo that is a few days old, while 25% take the intermediate position and
another 35% see its moral condition as close or identical to that of a human being.
Acceptance of the use of embryos depending on their origin
Public debate and regulatory attention concerning research with stem cells has recently crystallized around two concrete scenarios:
the use of spare embryos left over from fertility treatments and
the use of embryos created specifically for biomedical research purposes.
Citizens in most survey countries make differing judgments on these two scenarios, with acceptance of the use of spare embryos in all cases greater than that of embryos created for research.
In the case of spare embryos, mean scores were in the approval zone in all countries except Austria (4.4) and Japan (4.6), and stood higher than 6 points in the Czech Republic, Denmark, the Netherlands, Spain, and Sweden.
In the case of embryos created for research, scores tended to range from 4 to 5 points, with support only at all emphatic in the Czech Republic (6.2). The citizens of Italy, Poland, Spain, and the United Kingdom expressed marginal approval (just scraping in above 5 points on the scale) while remaining countries were all in the rejection zone.
Creation of hybrid embryos
Faced with a shortage of human embryos for use in advancing stem cell research, British scientists have sought official permission to create hybrid embryos. In September 2007, the UK agency regulating embryo research and fertility treatments, the Human Fertilization and Embryology Authority (HFEA), approved the creation of hybrid embryos for the purpose of obtaining stem cells for biomedical research. The technique in question involves the implanting of the nucleus of an adult human cell into the egg of an animal from which the nucleus has been previously extracted.
The BBVA Foundation survey also questioned citizens about their attitudes to such advances. The creation of hybrid embryos causes divided reactions both between and within countries.
The baseline scenario meets with attitudes of rejection (below 5 on an acceptance scale from 0 to 10) in most of the countries studied.
Only in the Czech Republic, Denmark, Israel, Italy, and Spain does the mean score approach the midpoint on the scale.
The citizens of Austria, France, Germany, and Poland are the most critical of this application.
Predominant in most countries is the fear that the technique could get out of control and lend itself to dangerous uses.
This feeling appears to run deepest in Austria, France, Israel, and Poland.
A rather different reaction emerges in Denmark, Sweden, and the Netherlands, where rejection of the creation of hybrids appears to have less to do with fear, and possibly more to do with perceptions that it is interfering with nature.
Second BBVA Foundation International Study on Attitudes to Biotechnology: Stem Cells.BBVA Foundation Social Studies Department. May 2008. [ Download PDF ]
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