A World Without Meaning.

Sadly the XXY community is awash with people like Callie where parents, siblings, loved ones and work colleagues complain about not “getting us” most within the community are medicated with anti depressive and /or amphetamines, resulting in our creativity being quenched. Those who are impacted struggle to fit in, to blend but, as her grandfather pointed out we live in an un-blendable society albeit mostly one with little time for people who are different to themselves.

Fertility Rates Among Non-Mosaic XXY; At Odds With Real Life Experience

Klinefelter syndrome (KS) is the one of the most frequent chromosomal disorder affecting 1/500–600 male newborns in the general population. The vast majority of the cases shows the 47,XXY karyotype, although mosaicism (46,XY/47,XXY) or higher-grade X aneuploidies can be rarely detected. Despite its high incidence, KS frequently remains undiagnosed and it is suspected later in adulthood after a diagnostic workup for hypogonadism, couple’s infertility, and/or sexual dysfunction.

Approximately 90% of adult men with homogeneous KS suffer from non-obstructive azoospermia (NOA), while fertility in mosaic KS seems to be less severely affected. Fathering is an important aspect for Klinefelter patients. Maiburg et al. performed a survey on 260 adults with KS and showed that most couples would like to have children and show a positive attitude toward assisted-reproductive techniques (ART). Infertility has been considered an untreatable disease in Klinefelter patients for many years. However, testicular sperm extraction (TESE), associated with ART, were found to be a valuable option for azoospermic men with KS to father a child, due to the presence of residual foci with preserved spermatogenesis

A recent systematic review and meta-analysis evaluated the outcomes of sperm retrieval by conventional TESE (cTESE) and by micro-surgical TESE (mTESE)in 1248 individuals with KS (Corona et al., 2017). Authors reported an average sperm retrieval rate (SRR) of 44% (43% and 45% after cTESE and mTESE, respectively), which is similar to that reported for men without KS. However, these meta-analytic data do not necessarily reflect the rates of SR that physician observe in clinical practice, which is typically lower than 50%. Moreover, results of meta-analysis should be interpreted according to the limitation of the study itself (inclusion of small, single centre studies, effect of un-adjusted confounders).

These meta-analytic data do not necessarily reflect the rates of SR that physician observe in clinical practice, which is typically lower than 50%. Moreover, results of meta-analysis should be interpreted according to the limitation of the study itself (inclusion of small, single centre studies, effect of un-adjusted confounders).

These observations prompted us to conduct a multicenter collaborative study to investigate the rate of and potential predictors of sperm retrieval by TESE in a cohort of azoospermic patients with KS presenting for primary couple’s infertility in the real-life setting.

With the recent improvements of TESE and ICSI procedures infertility has been no longer considered an untreatable disease in Klinefelter patients. In this context, most studies investigating TESE outcomes in patients with KS depicted conflicting results, in spite of having been generally rated of limited quality. A recent review showed that SRR in Klinefelter patients was approximately 50% world wide, thus similar to that of men without genetic abnormalities. However, these results appear to be unrealistic and even far from what physicians typically observe in the clinical practice.

The aim of this cross-sectional, real-life study was to investigate the prevalence of and possible factors associated with a positive SR in a cohort of white-European azoospermic patients with KS undergoing TESE at seven academic Andrology centres.

  • Department of Urology, Foundation IRCCS Ca’ Granda – Ospedale Maggiore Policlinico, University of Milan, Milan, Italy
  • Division of Experimental Oncology/Unit of Urology; URI; IRCCS Ospedale San Raffaele, Milan, Italy
  • Division of Urology; A.O.U. Città della Salute e della Scienza di Torino – Presidio Molinette; Turin, Italy
  • Andrology Unit, University Hospital S. Orsola, Bologna, Italy
  • Fundació Puigvert, Department of Andrology, Universitat Autonoma de Barcelona, Barcelona, Spain
  • Department of Urology and Andrology, Ospedale di Circolo e Fondazione Macchi, Varese, Italy
  • Department of Urology, AO Papa Giovanni XXIII, Bergamo, Italy


Of clinical relevance, we found that only one out of five KS men had positive SR in the real-life setting. Moreover, we failed to find any clinical, hormonal or procedural factors associated with SRR. These findings confirmed previous studies, where in contrast meta analytic data reported a significant higher SRR.

So far, there is a lack of reliable clinical and biological predictors for sperm retrieval success in NOA patients with KS. Advanced paternal age has been considered a negative predictive factor for SR in Klinefelter men undergoing TESE. Ozer et al, showed that TESE had better outcome before the critical age of 30.5 years, while other Authors suggested that TESE should be performed before 35 years. Recent evidence, however, support the lack of association between age and SR outcome. It has been shown that performing TESE between 15 and 23 years did not increase the SR rate compared to adult KS patients (25–29 years). We also confirm that SRR was not influenced by patient’s age in a real-life study with a large cohort of Klinefelter men.

According to this view it has been postulated that the progressive hyalinization and fibrosis of seminiferous tubules that is accelerated with the onset of puberty in KS is not ubiquitous and it is possible to observe tubules with normal residual activity. The impaired spermatogenesis could also be caused by an intrinsic problem of the germ cells, possibly linked to (epi)- genetics of the X surplus chromosome.

Testicular volume has been considered a possible factor associated with TESE success in Klinefelter patients, for example, showed that testicular volume was significantly higher in men with positive SRR. However, there are several studies reporting that testicular atrophy does not affect the success of SR (Corona et al., 2017; Franik et al., 2016; Garolla et al., 2018; Majzoub et al., 2016; Ozer et al., 2018; Vicdan et al., 2016). Garolla et al. (Garolla et al., 2018), indeed, observed a 23% SRR even in KS patients with testicles <1 mL. Our results support these findings since we failed to find any relationship between testicular volume and SRR in NOA patients with KS.

The clinical strength of our study is several-fold. First, we showed a low rate of positive sperm retrieval (up to 21%) in azoospermic men with KS in the real-life setting, thus suggesting that the crude data coming from meta-analytic studies cannot be routinely used in the everyday clinical practice.

There are conflicting results showing the association between serum hormones levels and TESE outcome in Klinefelter patients. Higher serum testosterone levels were found in Klinefelter men with positive SR as compared to those with negative SR . Similarly, the combination of high testosterone levels and low levels of LH was considered as positive predictive marker for SR in in both adolescents and adults with KS. Conversely, recent meta analytic data showed that serum hormones levels did not influence SRR in Klinefelter patients. We also showed that testosterone, FSH and LH levels were not different according to TESE outcome in our cohort of Klinefelter patients; however, additional studies are needed to explore the predictive value of serum hormones levels in KS

Testosterone treatment in KS has been previously considered as a negative factor for sperm recovery. In our population TRT was not associated with worse SRR as compared to that of men who did not received any supplementation. Our findings are in line with previous studies that
did not show any impact of testosterone treatment on spermatogenesis in adolescents and adults Klinefelter men. Therefore, some authors did not recommend postponing androgen treatment in adolescent boys with KS for fear of impairing their TESE results .

Lastly, the superiority of mTESE as compared to cTESE in NOA men has been extensively investigated in the previous literature but with conflicting results. This is particularly true also in the Klinefelter population. Only few reports have shown that mTESE could be associated with better SRR than cTESE. Conversely, our results, in agreement with recent studies showed that TESE technique is not associated with SRR.

Further strength of present study is that we have comprehensively investigated a large homogenous group of patients with a detailed hormonal evaluation, and an accurate assessment of possible confounders for impaired semen parameters, such as recreational habits and health comorbidities. However, none of these parameters were found to be associated with SRR.

The clinical strength of our study is several-fold. First, we showed a low rate of positive sperm retrieval (up to 21%) in azoospermic men with KS in the real-life setting, thus suggesting that the crude data coming from meta-analytic studies cannot be routinely used in the everyday clinical practice. Second, we cross-sectionally showed that clinical, hormonal and procedural factors are unable to predict the SRR in patients with KS. In this context, we believe that Klinefelter patients should be carefully counselled regarding their chance of retrieving spermatozoa after TESE. Further strength of present study is that we have comprehensively investigated a large homogenous group of patients with a detailed hormonal evaluation, and an accurate assessment of possible confounders for impaired semen parameters, such as recreational habits and health comorbidities. However, none of these parameters were found to be associated with Sperm Retrieval Rates.

Continue reading…………

NHS in Disarray with Dispensing Hormones

Given the treatment of XXY individuals is (questionably) a sub speciality of Endocrinology it is envisaged that XXY’s regardless of how they identify their gender would be exposed to the same difficulties experienced by GD and Trans Individuals.

If you are an XXY individual we would love to hear of any difficulties you are experiencing with getting the care you believe you deserve, please comment below. Thanks.

Gender dysphoria can be difficult terrain for primary care doctors. Gender identity and gender dysphoria are not part of the GP curriculum. Patients face an average 18 month wait for specialist referral. And the NHS’s frontline doctors may bear the brunt of some patients’ distrust of a system that can’t cope with the current demand for services.

Specialist gender identity clinics (GICs) have seen referrals at least double over the five years to 2018, said James Palmer, medical director for specialised services at NHS England. As of 2019, about 7839 adults were waiting for a first appointment. Some 4000 young people are waiting for a specialist appointment.

Chris Preece, a GP in North Yorkshire, told The BMJ that the two year wait for patients to be seen by his local gender identity clinic puts pressure on GPs to provide bridging prescriptions for hormone treatment, even though they lack formal training in treating gender dysphoria.

General Medical Council guidance recommends that GPs consider prescribing hormone treatment to adult transgender patients who try to medicate themselves while awaiting specialist care. Preece says that waits can create “perverse incentives” for patients to buy hormones on the internet or elsewhere. Without training, and given the media controversies about trans care, Preece adds, many GPs “actively choose not to prescribe
[hormone treatments]—which protects us, but is unhelpful to the patient.”

Last year the Royal College of General Practitioners published a statement on caring for gender questioning and transgender patients. This says that long waits for patients to see a specialist are putting pressure on GPs to provide services beyond their remit and with limited access to specialist support if they do so. The college adds, “GPs should not be expected to fill the gaps in commissioned gender identity specialists and clinics.”

This month the Royal College of General Practitioners launched an e-learning course on gender variance this year.

A recent study by Anna Carlile, a sociologist at Goldsmiths University of London, investigated the experience of trans children and their parents in English healthcare. She told The BMJ that participants reported experiencing direct discrimination and being referred to by a previous name in GP surgeries and other clinical settings and believed that GPs “lack clinical and therapeutic knowledge,” particularly concerning the prescribing of drugs to delay puberty.

GPs are wary of prescribing without robust research into the outcomes and side effects of puberty blockers and cross sex hormones, and the co-occurrence of gender dysphoria and autism can complicate diagnosis and treatment. The UK has no nationally recognised training programme for gender identity healthcare, although there are apprenticeship training models in specialist clinics and guidelines from international professional bodies

Nearly two in five adult trans respondents to a large government survey reported dissatisfaction with NHS services related to their gender identity. Jane Fae of the charity Trans Media Watch, which campaigns for better media coverage of trans issues, says that many trans people now view GPs as “an obstruction to overcome.” Some trans groups, including Non
Binary London and Trans Forum UK, circulate lists of GPs they deem to be sympathetic or unsympathetic to requests for referrals to gender identity clinics or to prescribe treatments that patients have asked for.

Some areas in in the UK are showing signs of service reconfiguration. Cardiff’s new gender identity clinic has GPs on site. A model is being trialled in Manchester in which GPs work with gender identity clinics to improve their diagnostic skills. And the Royal College of Physicians intends to introduce a professional development programme for GPs about gender
identity this year.

NHS England, meanwhile, is considering a decentralised service for adults in which GPs can prescribe cross sex hormones without specialist involvement if they have sufficient expertise.

The royal college recommends that the GP curriculum should cover gender dysphoria and trans issues, that expanding specialist gender services be a priority, and that NHS IT systems be updated to record patients’ gender identity and trans status.

Preece would welcome such changes. “The hardest thing about being a GP is when you know that the service being offered to patients falls short of what you believe they need and deserve,” he says. “That chasm is at its greatest when dealing with patients with gender dysphoria.”

Continue reading……..

What It's Like to Be Intersex

“It was like a bomb being dropped into our life.”

That’s Isaiah Ngwaru. He’s talking about the moment he and his wife, Betina, discovered their child, Tatenda, was intersex. Although they had been raising her as a boy, Tatenda had railed against the strict masculine norms in their hometown of Gutu, Zimbabwe. She wore high heels, dressed in skirts, and expressed a desire to change her gender. It wasn’t until she underwent an operation for a hernia, however, that Tatenda’s condition became medically salient to her parents—the surgeon found “something like an ovary” in the child’s body. “I just knew it. I felt it in my gut. I’m a girl,” says Tatenda in this short documentary.

“She’s Not a Boy” was co-directed by Robert Tokanel and Yuhong Pang. It is part of The Atlantic Selects, an online showcase of short documentaries from independent creators.

XXY Trailblazer Steps Up To The Podium

University of Central Florida associate lecturer Irene Pons  and her legal studies class are striving to help a Central Florida woman revise her birth certificate.

Why does Juleigh Mayfield need legal intervention in order to complete such an ordinary task?

Because her story isn’t so typical.

Neither Male or Female

Although Mayfield lived four decades of her life as a man, she was technically born intersex, meaning she possesses both male and female biological characteristics. Intersex is a naturally occurring variation, and while children are assigned a legal sex at birth, sometimes they later learn their gender does not match that selection.

According to InterACT Advocates for Intersex Youth, experts estimate that as many as 1.7 percent of people are born with intersex traits, which is about as common as being born with red hair.

At the age of 17, Mayfield was diagnosed 47, XXY with Klinefelter syndrome. 47, XXY is a genetic variation that results when a baby is born with an extra copy of the X chromosome. Klinefelter syndrome develops at puberty and has the potential to adversely affect genital growth, which can lead to a lower production of hormones.

For the next six years she took a high dosage of testosterone daily, but a prostate cancer scare forced Mayfield to stop the supplement.

At age 43, after experiencing a number of medical complications linked to her variation — including lupus, osteoporosis and a hysterectomy — doctors at the National Institute of Health advised her to take estrogen for a better quality of life.

“I said, ‘What if I go home and I don’t go on anything?’ Because I knew that the estrogen would  heighten all the feminine aspects of my life and cause a full transition,” Mayfield says. “And the doctor said, ‘We believe that if you go home and you do nothing, you’ll be dead in five years.’”

She chose the estrogen, the surgery and her life.

But with the decision to become female came a new set of issues.

Battle for a Birth Certificate

Her Alabama birth certificate list male and her former name, James Bradford Mayfield. In Alabama, a court order is needed to change the gender on a birth certificate, but there is no form or process available to obtain one. Without an updated birth certificate, Mayfield struggles with presenting legal documentation for things like loans, employment and updating her passport.

“It’s hard to understand that a piece of paper impacts so much of what we do,” Mayfield says.  “I travel a lot for advocacy, and I need to be able to say, ‘This is who I am.’ I don’t want to have to hide. Nobody should have to hide.”

A court order is needed to change the gender on a birth certificate, but there is no form or process available to obtain one.

So Pons, who maintains her certification as a lawyer, and her intercultural legal competence class offered to step in. Pons first met Mayfield in the 1990s when they both worked at Walt Disney World. She offered her services pro bono once she learned of Mayfield’s predicament.

First on the list was a legal name change. It was a simple process, and Pons was able to easily find a name change form on the court’s website.

A form for a gender change, however, didn’t seem to be available — anywhere. Pons’ class focuses on diversity and inclusion cases, and Mayfield’s case suddenly presented an opportunity to immerse the students in a real life example. Twenty one undergraduates found themselves with a very important new assignment: create a petition for a gender-marker change.

The team at The XXY Project offer our best wishes to Juleigh Amanda in achieving the recognition she so rightly deserves. God Speed!

Continue reading………

Intersex: Implications of Umbrella Terms in The Interest of Science.

The intersection of science and identity intensifies the complexity of the umbrella term DSD (Disorders of Sex Development)/Intersex. The interest of science to classify DSD/Intersex conditions to formulate evidence-based best practice has implications on personal identity. Fundamental to ethical decision-making in intersex is the right to choose one’s identity, which includes categorization within the umbrella term DSD/Intersex. In this lecture Dr Jennifer Markusic Wimberly, offers a bioethics lens to balance umbrella terms and individuality to normalize the differences in sex development. Jennifer is a Task Force Member on DSD/ Intersex with the American Psychological Association

Objectives

• 1. Understand the controversies surrounding the 2006 Consensus Statement on Intersex classifying individuals within three categories of Disorders of Sex Development.

• 2. Identify the historical background that has supported a classification system.

• 3. Expand the concept of fully informed consent to identity within the umbrella term DSD/Intersex.

• 4. Apply educational and research methodologies that would allow for identity and individuality to normalize differences in sex development.

Target Audience: Physicians, faculty, fellows, residents, trainees, students, health care professionals.

Educational Objectives: At the conclusion of this activity, the participant should be able to:
1) Recognize perennial and emerging bioethical problems in clinical practice, research, public health, and health policy arenas.
2) Describe competing/contrasting viewpoints concerning these bioethical problems.
3) Demonstrate increased skills in analyzing and practically handling bioethical problems in the clinical, research, public health, and health policy arenas.

Educational Method: Lecture and question-and-answer period.

Accreditation: The University of Texas Southwestern Medical Center is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians.

Credit Designation: The University of Texas Southwestern Medical Center designates this live activity for a maximum of 1 AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity. The University of Texas Southwestern Medical Center designates this activity for 1 hour(s) in medical ethics and/or professional responsibility.

Conflict of Interest: All persons in the position to control the content of an education activity are required to disclose all relevant financial relationships in any amount occurring within the past 12 months with any entity producing, marketing, re-selling, or distributing health care goods or services consumed by, or used on patients. A primary mechanism to resolve identified conflicts of interest is a content review that is prior to the activity.

Off-Label Uses: Because this course is meant to educate physicians with what is currently in use and what may be available in the future, there may be “off-label” use discussed in the presentation. Speakers have been requested to inform the audience when off-label use is discussed.

Continue reading…..

How science has shifted our sense of identity

Across the arc of the past 150 years, we can see both science and scientism shaping human identity in many ways. Developmental psychology zeroed in on the intellect, leading to the transformation of IQ (intelligence quotient) from an educational tool into a weapon of social control. Immunology redefined the ‘self’ in terms of ‘non-self’. Information theory provided fresh metaphors that recast identity as residing in a text or a wiring diagram. More recently, cell and molecular studies have relaxed the borders of the self. Reproductive technology, genetic engineering and synthetic biology have made human nature more malleable, epigenetics and microbiology complicate notions of individuality and autonomy, and biotechnology and information technology suggest a world where the self is distributed, dispersed, atomized.

Individual identities, rooted in biology, have perhaps never played a larger part in social life, even as their bounds and parameters grow ever fuzzier.

Designs on intelligence

“Methods of scientific precision must be introduced into all educational work, to carry everywhere good sense and light,” wrote the French psychologist Alfred Binet in 1907 (English translation published in 1914 (ref. 2)). A decade earlier, Binet and Théodore Simon developed a series of tests for French schoolchildren to measure what they called ‘mental age’. If a child’s mental age was less than her chronological age, she could receive extra help to catch up. The German psychologist William Stern took the ratio of mental to chronological age, giving what he called the IQ and, theoretically, making it comparable across groups. Meanwhile, Charles Spearman, a British statistician and eugenicist of the Galton school, found a correlation between a child’s performance on different tests. To explain the correlations, he theorized an innate, fixed, underlying quality he called ‘g’, for ‘general intelligence’. Then the American psychologist Henry Goddard, with the eugenicist Charles Davenport whispering in his ear, claimed that low IQ was a simple Mendelian trait. Thus, step by scientistic step, IQ was converted from a measure of a given child’s past performance to a predictor of any child’s future performance.

IQ became a measure not of what you do, but of who you are — a score for one’s inherent worth as a person. In the Progressive era, eugenicists became obsessed with low intelligence, believing it to be the root of crime, poverty, promiscuity and disease. By the time Adolf Hitler expanded eugenics to cover entire ethnic and cultural groups, tens of thousands of people worldwide had already been yanked from the gene pool, sterilized, institutionalized, or both.

Immunologists took another approach, They located identity in the body, defining it in relational rather than absolute terms: self and non-self. Tissue-graft rejection, allergies and autoimmune reactions could be understood not as a war but as an identity crisis. This was pretty philosophical territory. Indeed, the historian Warwick Anderson has suggested that3 in immunology, biological and social thought have been “mixing promiscuously in a common tropical setting, under the palm trees”.

Not me

The immunological Plato was the Australian immunologist Frank MacFarlane Burnet. Burnet’s fashioning of immunology as the science of the self was a direct response to his reading of the philosopher Alfred North Whitehead. Tit for tat, social theorists from Jacques Derrida to Bruno Latour and Donna Haraway have leaned on immunological imagery and concepts in theorizing the self in society. The point is that scientific and social thought are deeply entangled, resonant, co-constructed. You can’t fully understand one without the other.

Later, Burnet was drawn to new metaphors taken from cybernetics and information theory. “It is in the spirit of the times,” he wrote in 19544, to believe there would soon be “a ‘communications theory’ of the living organism.” Indeed there was. In the same period, molecular biologists also became enamoured of information metaphors. After the 1953 solution of the DNA double helix, as the problem of the genetic code took shape, molecular biologists found analogies with information, text and communication irresistible, borrowing words such as ‘transcription’, ‘translation’, ‘messengers’, ‘transfers’ and ‘signalling’. The genome ‘spells’ in an ‘alphabet’ of four letters, and is almost invariably discussed as a text, whether it is a book, manual or parts list. Not coincidentally, these fields grew up alongside computer science and the computing industry.

The postwar self became a cipher to be decoded. DNA sequences could be digitized. Its messages could, at least in theory, be intercepted, decoded and programmed. Soon it became hard not to think of human nature in terms of information. By the 1960s, DNA was becoming known as the ‘secret of life’.

Many selves

In the late 1960s and 1970s, critics (including a number of scientists) grew concerned that the new biology could alter what it means to be human. The ethical and social issues raised were “far too important to be left solely in the hands of the scientific and medical communities”, wrote James Watson (of DNA fame and later infamy) in 1971.

In 1978, Patrick Steptoe and Robert Edwards succeeded with human in vitro fertilization, leading to the birth of Louise Brown, the first ‘test-tube baby’. By 1996, human cloning seemed to be around the corner, with the cloning of a sheep that Ian Wilmut and his team named Dolly.

Cloning and genetic engineering have prompted much soul-searching but little soul-finding. There has long been something both terrible and fascinating about the idea of a human-made, perhaps not-quite-person. Would a cloned individual have the same rights as the naturally born? Would a baby conceived or engineered to be a tissue donor be somehow dehumanized? 

Do we have a right to alter the genes of the unborn? Or, as provocateurs have argued, do we have an obligation to do so? The recent development of potent gene-editing tools such as CRISPR has only made widening participation in such decision-making more urgent.

Arguments, both pro and con, around engineering humans often lean on an overly deterministic understanding of genetic identity. Scientism can cut both ways. A deep reductionism located human nature inside the cell nucleus. In 1902, the English physician Archibald Garrod had written5 of genetically based “chemical individuality”. In the 1990s, as the first tsunamis of genomic sequence data began to wash up on the shores of basic science, it became obvious that human genetic variation was much more extensive than we had realized. Garrod has become a totem of the genome age.

By the end of the century, visionaries had begun to tout the coming of ‘personalized medicine’ based on your genome. No more ‘one size fits all’, went the slogan. Instead, diagnostics and therapy would be tailored to you — that is, to your DNA. After the Human Genome Project, the cost of DNA sequencing nosedived, making ‘getting your genome done’ part of mass culture.

Today, tech-forward colleges offer genome profiles to all incoming first-years. Hip companies purport to use your genome to compose personalized wine lists, nutritional supplements, skin cream, smoothies or lip balm. The sequence has become the self. As it says on the DNA testing kit from sequencing company 23andMe, “Welcome to you.”

Boundaries blur

But you are not all you — not by a long shot. The DNA-as-blueprint model is outdated, almost quaint.

For starters, all of the cells in a body do not have the same chromosomes. Cisgender women are mosaics: the random inactivation of one X chromosome in each cell means that half a woman’s cells express her mother’s X and half express her father’s. Mothers are also chimaeras, thanks to the exchange of cells with a fetus through the placenta.

Chimaerism can cross the species boundary, too. Human–chimpanzee embryos have been made in the laboratory, and researchers are hard at work trying to grow immune-tolerant human organs in pigs. Genes, proteins and microorganisms stream continuously among almost any life forms living cheek by jowl. John Lennon was right: “I am he as you are he as you are me and we are all together.”

Even in strictly scientific terms, ‘you’ are more than the contents of your chromosomes. The human body contains at least as many non-human cells (mostly bacteria, archaea and fungi) as human ones6. Tens of thousands of microbial species crowd and jostle over and through the body, with profound effects on digestion, complexion, disease resistance, vision and mood. Without them, you don’t feel like you; in fact, you aren’t really you.

The biological self has been reframed as a cluster of communities, all in communication with each other.

These, too, cavort promiscuously beneath the palms. Scientists found that they could use a person’s microbiome to identify their sexual partner 86% of the time7. The communities of greatest similarity in cohabiting couples, they found, are on the feet. The thigh microbiome, by contrast, is more closely correlated with your biological sex than with the identity of your partner.

A body part, a cesspool, a subway car, a classroom — any place with a characteristic community — can be understood as having a genetic identity. In such a community, genetic information passes within and between individual organisms, through sex, predation, infection and horizontal gene transfer. In the past year, studies have shown that the communities of symbiotic microbes in deep-sea mussels become genetically isolated over time, like species. In fungi, genes called Spok (spore-killer) ebb and flow and recombine across species by ‘meiotic drive’, a kind of genomic fast-forward button that permits heritable genetic change to occur fast enough to respond to a rapidly changing environment. The genome, as the geneticist Barbara McClintock said long ago, is a sensitive organ of the cell.

Epigenetics dissolves the boundaries of the self even further. Messages coded in the DNA can be modified in many ways — by mixing and matching DNA modules, by capping or hiding bits so that they can’t be read, or by changing the message after it’s been read, its meaning altered in translation. DNA was once taught as a sacred text handed faithfully down the generations. Now, increasing evidence points to the nuclear genome as more of a grab bag of suggestions, tourist phrases, syllables and gibberish that you use and modify as needed. The genome now seems less like the seat of the self and more of a toolkit for fashioning the self. So who is doing the fashioning?

Continue reading………

How “Female Hysteria” Hampered Biomedical Research

For anyone who has ever wondered why XXY’s are continually compared with XY males across all clinical trials, then wonder no more. From the very limited research that has been undertaken, it’s well established that XX & XXY brains differ from those that are XY, which then raises an obvious question of why it’s long been presumed our brains would function at their optimal best when saturated with testosterone? Like XX females our differences are not limited to that one area alone but are multi faceted and seen throughout the entire body. Hopefully, just hopefully as XX research gains traction those differences will become more apparent, leading to XXY’s being treated as individuals in place of someone’s idea of what it means to be human. 

 

The negative impact of this unquestioned assumption on the status of women is beyond measure, but an artfully written perspective piece in Science by Dr. Rebecca Shansky, Associate Professor of Psychology at Northeastern University, shines a light on a dark corner of unintended harm, the exclusion of female subjects in neuroscience research.

In 1993, in an effort to improve health across the board, Congress mandated that all NIH clinical trials include women or give darn good reasons why not. Did it work? Yes and no. The inclusion of women in clinical trials research increased, often to parity with men. But there were two simmering problems. First was the mandate did not include a provision that the data be analyzed for any influence of gender. Thus, while thousands of studies dutifully reported the percent of male and female subjects, that was often the end of it, with the tacit assumption that there was no difference in men and women in whatever parameter was being measured in response to whatever treatment. An egregious case of leaving data on the table, but at least women were in the mix.

Far more insidious and unrecognized for more than 20 years is the fact that the fairness mandate had not trickled down to scientists working at the bench conducting research on animals and cell lines. Not only were bench scientists not getting the message, in the case of neuroscience there was a concerted effort to exclude female subjects, mostly rats and mice, from studies of the brain. Just how bad things had gotten was revealed in an impactful report by Irving Zucker, a Professor of the Graduate School in the departments of Psychology and Integrative Biology at UC-Berkley, who, working with a trainee at the time and now an Associate Professor of Psychology at Smith, Dr. Annaliesse Beery, analyzed publications that used animals for research across a wide range of fields (i.e. immunology, endocrinology, behavior etc.), and found there was a tremendous skewing in the representation of  the sexes in basic research but that neuroscience was the worst offender, with almost six times as many studies exclusively using male animals.

Continue reading……

New Kid On The Block

Its been a long time coming but, we are here now and intend to use this platform to drive global awareness of what XXY is, as we move forward you will read of testimonials from XXY individuals the world over and share in their experiences of who they are, what has worked for them, what hasn’t, and of the shared concerns we have for infants who are subjected to treatments only legally permissible for adults, and even then with the greatest of caution for when things could go wrong.

Please come back and visit from time to time, to see where we are at, where we’ve been and where we are going.