A live conversation between
Margaret Zacharin, Melbourne, Australia
Abiola Oduwole, Lagos,Nigeria
and
Ze’ev Hochberg, Haifa, Israel
Transcribed by Despoina Manousaki
Comments by Herwig Frisch, Paul Saenger, Gabriele Hausler, Ken Ong, Michael Ranke
Ze’ev Hochberg: I will start with a short introduction to the concept of Disease Burden. It is mostly defined as the impact of a health problem on society as measured by financial cost, work productivity, mortality and morbidity, and utilization of healthcare resources at the national or world level. It is often quantified in terms of quality-adjusted life years or disability-adjusted life years, both of which quantify the number of years lost due to disease (YLD). In 2004, the health issue leading to the highest YLD for both men and women was depression; in 2010, it was lower back pain.
Our conversation today deals rather with the personal and family burden associated with a disease and the personal costs that include mostly disability, discrimination, and financial burden. As pediatricians, we are aware of many more subtle aspects of a disease burden, and certainly when dealing with CAH. Important types of burden cannot be counted in measures of mortality, or in economic costing.
Because the traditional medical approach focuses on the individual who is ill, it often ignores the burden of disease for families, households, and the community.
Disease burden is, by definition, a negative term—it is not surprising, then, that measures of disease burden concentrate on the factors that cause illness or make it worse. But a few researchers have argued that a full understanding of burden of disease involves an appreciation of factors that protect and promote health, such as social cohesion, healthy peer relationships, and supportive school or work environments.
Some measures of burden of disease are based on the view that interventions should do the greatest good for the largest number of people. This is certainly true for developing countries. But achieving greater justice in health may involve sometimes doing the most good for a small number of people, who carry the heaviest burden of disease. Often, non-infectious non-oncological diseases like CAH, but also other endocrine diseases, are ignored. Our conversation today is about an additional complexity of CAH – having it in developing countries. As if the burden of CAH was not heavy enough also in developed countries.
We will hear the views of Margaret and Abiola.
Professor Margaret Zacharin is a child and adult clinical endocrinologist working at The Royal Children’s Hospital. To us, she is best known as a teacher and an experienced endocrinologist due to her work in India, other Asian countries, Africa and ESPE.
Professor Abiola Oduwole is a Pediatric Endocrinologist from Lagos University Teaching Hospital. For us she is mostly the founder and chief coordinator of the Pediatric Endocrinology Training Centre for West Africa (PETCWA) and the founder and the mother of pediatric endocrinology in Africa. Unfortunately, she was denied a visa to Austria, but she has submitted her views in writing.
Margaret Zacharin: Thank you Ze’ev and I hope everybody can understand my accent. Thank you for the opportunity to participate today. This morning, when I got up, I thought this was a difficult topic, I looked in the mirror and told myself: the stage is yours; on the other hand, perhaps, as endocrinologists, we do have a little bit more experience….So I hope to challenge you today. I will read some of this because it is quite complicated.
If you were to stop any random person in the street and ask what he or she thought the single most important element that defines a male or female, how many would say X and Y?
No matter how modern we are, flexible, relaxed, at ease with gender fluidity, comfortable with differences, variations or alterations in sex development we might tell ourselves we feel, it remains a cold fact that most of the world think differently and those small chromosomes create much angst for individuals, families and communities.
To be confronted by confusion or uncertainty in any sphere of life is traumatic, unsettling and demands early positive resolution, or the outcome is likely to have long-term adverse ramifications. The human condition demands clarity and purpose and relatively few individuals can cope with prolonged uncertainty in any field. Furthermore, from earliest experience most of us tend to crave a degree of similarity, both in form and thought. Those who are or who feel different often struggle for very long periods to find a niche where self-expression is accepted, tolerated, and provides satisfaction, pride and importantly self-worth.
So let us now consider how fortunate birth and educational opportunities might have informed successful transition to the cultured, broad minded, tolerant and self-tolerant individuals we like to think of as ourselves, as highly trained personnel from every continent and country, and how we might have coped had we not been given these advantages. Think then, of how a family from an isolated community in a village in Kenya, Sudan, Nigeria, North Pakistan, or India, Vietnam or indeed anywhere, might cope, those financial and educational advantages not having been conferred; confronted with a set of circumstances so radically different from anything they could have imagined. For them, as for us, X and Y have an identical meaning, whether they may be nameable.
Today we are talking of only a tiny microcosm of the psychological and financial upheaval incurred when an infant is born with a disorder of sex development, in this case, with congenital adrenal hyperplasia. For this audience we do not need to dwell on the terrible toll for a family where a baby or child dies, but the reality is that, in many of those countries mentioned, the sole clue to a baby with CAH may be a history of one or many, infant or childhood deaths in a family, frequently a sad procession of ghostly boys.
The first and foremost confrontation for a family when a diagnosis of CAH is made is the spectre of what might have been, had someone only known. Death stalks life in many places, in a way no longer known or even considered in wealthy or educated societies. Families accept a huge toll to infection, starvation, and a great unknown. Grieving is perhaps different in situations when the grasp on life itself is tenuous. We cannot not enter the lives of others to know how deep or pervasive that pain remains.
But for now, we imagine that a diagnosis of CAH IS considered in the neonate, in some more distant clime than that in which we feel at home, where a baby with genital ambiguity is born who would possibly be a female with CAH. Reported incidence of mixed gonadal dysgenesis or 5ARD in many countries is significantly higher than that of CAH, presumably because many cases are missed. A vomiting boy with increasing pigmentation remains much less likely to be detected and in most of these places boys with severe salt wasting CAH do not exist.
Since the very first question asked by the parents is, “is it a boy or a girl?” take a moment to imagine the darkness and confusion descending on a village parent with minimal primary education, given this circumstance. This shock, incomprehensible although it is, has to be assimilated, considered, transmitted to as few as possible and concealed from inquisitive and uncomprehending eyes, in a matter of minutes to hours. How then to cope with the consequences?
Assuming a more or less correct diagnosis can be made, often with minimal available tools, such as electrolytes and an ultrasound, and that a proper, informed discussion has been made –which is often not available- the cascade may be different in differing circumstances. The essential question, however, remains: What is it, to be a boy or a girl in the context of a family’s circumstances and conditions? Intrinsic features of identity as a boy or girl cover all aspects of physical and medical needs, emotional, social, sexual health, community acceptance and future fertility. ‘Best’ choice in our terms may be very different from best in a village setting, in circumstances where children often do not have access to surgery. While physical differences and deformities are rife and accepted in communities, is it the same for genital differences?
We may now focus on some areas of the world where resources are constrained and circumstances may differ wildly from those within our own bounds of education, cultural, social, and sexual acceptance. We speak here solely of those who have not had these opportunities.
In India, considerations are complex, fertility looms large in the public consciousness and it is often the overwhelming consideration when a family is confronted with a baby with CAH. Fear of abduction or assimilation by the hijra may be overriding, resulting in secrecy, deception, and chronic anxiety. Being male has advantages we no longer dream about: to be the bread winner, to be marriageable, to inherit and to be the primary carer of parents as they grow older, particularly in the case of the oldest boy. If an infant is severely virilised, no amount of discussion of a potentially fertile female with CAH may weigh in the scales. Financial constraint, surgical outcome and uncertainty regarding gender identity complicate decision making. For those diagnosed late, where increasing virilisation or a male sex of rearing has been chosen, there comes an increasing burden of decision making.
Amongst those who have all the advantages of high quality specialized medical management at their fingertips, some self-righteous decisions may be made that are simply irrelevant when put in the context of such a family, living in circumstances that demand constraints and with limits that do not affect those who have choice. To suggest a change of sex for an 8 or 10 year old, XX female with CAH, reared as a male, requires the child to have a flexible or unformed gender identify, to entertain massive social upheaval, such that the family must move themselves from home and community to an entirely new environment where they can make a new life in the opposite gender. Essentially, they are being asked to be a shadow on a landscape of fear of the unknown. Add to these burdens the trauma of suggested genital reconstructive surgery and the pressure of decisions being taken by others on the behalf of the child. Many studies have shown that, once established, such a male gender identify cannot be changed and that adult outcomes are dismal when efforts to do so are employed. In India, Ammini et al have reported 26 children presenting late with virilising CAH, three of whom were raised as boys, where gender identity was concordant with sex of rearing.
In India, for the majority of the population there remains a vast social divide, where conventions are paramount. Lack of disclosure regarding physical differences and childbearing capacity at the time of arranging a marriage, for a significant proportion of the community, may result in social disgrace and return of the girl. By contrast, Malay Islamic law favours a female sex of rearing, in terms of inheritance laws, with retention of a woman’s control over her finances under all circumstances. So, community traditions have differing bearing on family perceptions.
Yet another angle may arise, where there may be decisions to be made in circumstances of increasing virilization in early steroidogenic disorders such as 17 hydroxylase deficiency. Take, for instance, an example of a girl who has lived a life amongst women, who has no experience of living with or amongst boys but who is attracted to a male role, due to progressive virilization. Her decision to live as a male would theoretically result in all the advantages discussed previously but might be outweighed by the isolation and social shock of suddenly living in a male environment. To test this proposal, she would have to undertake the upheaval of transition to a totally new city, town or village, with no support, with all the oppressive features of being entirely alone and unguided in a new world- daunting indeed! Finding a compromise with social, emotional and family support may be a totally overwhelming proposition.
Reliable information as to the impact of any or all of these factors remains extremely limited. Prof Bhatia et al, again from India, have studied families with DSD in North India, where appearance of genitalia, medical advice, ability to bear children, economic independence, religious beliefs were listed as the most important features in decision making. A small cohort of ten young people there, aged 12 to adulthood were asked about timing of genital surgery. All but one of them indicated a preference for early surgery to reduce differences from peers, to improve self-confidence and to reduce the mental trauma of to being compared with other children.
In Vietnam the choice of sex rearing is perhaps easier for a child with CAH, as there is less emphasis on fertility than on the health of the child. Medicines availability, continuity and cost are overriding features and the quality of surgery and long-term outcome are variable and can cause enormous difficulties. Financial considerations may be so overriding that traditional medicines can be preferred. Medicines as glucocorticoid are still purchased outside of the country and mineralocorticoid is unavailable except where access to external purchase is possible. One bottle of fludrocortisone was reported to cost half the annual income for a family in a survey by Warne et al. Stigma and ostracization within a village community have been demonstrated there, as in India. The support group Care and Living with Neighbours (CLAN)
has been well established in Vietnam for over 10 years, allowing some access to family and community support for CAH. In a study by Warne et al, religion was not reported to play a big role in decision making, as to sex of rearing, but early decision making and hopefully adequate surgery was considered paramount to reduce the social impact of physical difference, with great anguish in families where differences persisted.
In Africa diagnosis is more often late, due to home deliveries, lack of identification of genital ambiguity, with less rigorous midwife training to recognise variations in genital appearance and with the problem of ‘identification’ of a sick neonate as being due to an infectious cause rather than with a possible consideration of CAH. Death due to gastroenteritis or HIV is still prominent and, sadly, male infants and boys with severe salt wasting CAH simply do not exist in many of these environments. Secrecy, fear of tribal indiscretions and beliefs that ambiguity may have been brought about by an evil eye or a curse is still prevalent in some societies. Availability, cost and continuity of medications and the tyranny of distance are all considerations. Together, these issues may be overridden by a powerful need to conceal genital changes from family and community.
Even assuming a correct diagnosis is made and medications are able to be administered, a child may die in ensuing months, related to lack of understanding of a family for the need to increase medications during illness and also compounded for some families, by lack of confident belief in western medicine, rather than a lack of understanding. Going home via the witch doctor is still a common cause of action by some.
Recognition of religious aspects of community life is essential to diagnostic decision making, where applicable and should be an integral part of providing optimal outcomes and reducing potential harms in the cultural environment of a family .This has been well-reported by Meyer-Bahlburg, by Warne and Raza, in various publications. Lack of recognition of these aspects of gender-related issues, where a family is living in a community outside of their cultural norm, can compound difficulties throughout a lifetime. A suggestion has been made by Zainuddin to include a religious authority in the multidisciplinary team under these circumstances. Not a typical path for our communications with families at this time, I think.
We may rail against the continued morbidity and mortality incurred by these problems but do we ever really consider having to walk 300 – 400 km to seek help or to take the local bus over several days to see a doctor who provides unaffordable medications in quantities that will last only weeks and where the purchase of such medications causes the whole family’s nutritional intake to suffer severely. Is it any wonder that, for some, the death of an infant so affected may be preferable to imposing even more adverse circumstances upon healthy members of a family. This is not confined to the African continent. I have personal experience in India of parents bringing their sick child to hospital, asking for good advice and management, but where they cannot afford the fare home.
Where then lies the ethical dilemma of benefit versus harm? Do we invoke the Hippocratic oath as most of us were taught or do we understand that sometimes survival hangs in the balance of the scales. Is the benefit paramount, of correct diagnosis of an infant with salt losing CAH being managed with steroid and surgery and made permanently steroid dependent, with risks for hospitalisation and death stalking her childhood and adolescence or is there a benefit to a healthy 46XX male with no apparent steroid requirement except in times of stress, who can obtain employment, be a breadwinner for the family and who can marry in his community?
Are ethics immutable, created and determined by discussions, determined by erudite discussion and drawing upon learned philosophies from Aristoteles to Kant, to John Stuart Mill; or there is space or a place where reality is so far from the circumstances where these rules have been formulated and elected, that all educated and knowledgeable physicians of every country, ought consider a part of our universe where potential pain or irretrievable sorrow may follow if we fail to take these considerations into account when delivering our judgement and the “rightness” of our views.
Hochberg: CAH is certainly not the only disease that is polarizing us in Africa. In Africa and many developing countries, it was the standard that a woman delivers seven children, and five of them survive to the tribe. What I am saying is that, while it is acceptable to those of us coming from industrial societies that you try to do all you can by introducing modern medicine and teach the complexity of CAH and its treatment, the environment in Africa is so different and the ethics may be too. So that often it is not possible and not advisable to insist on using modern day Western medicine and ethics.
Zacharin: I think the message is the same. From a European point of view, perhaps it is directed more towards the African continent, but the Indian subcontinent and many other places are exactly the same. The cost and availability of medicines, to undertake transformation of a child who is dying to a child who is healthy, poses enormous social, nutritional, financial discomfort on the family, may be worth the risk; but maybe not. What if none in the family can eat because one very young girl member needs daily medications. I think the trouble is that we sit in judgement on people when we have no notion who they are; and yes we can’t live and deliver a standard of care in a state of ignorance, but we are in a position where we must understand that the cost of delivery of this standard is very high.
Hochberg: We started PETCA in Nairobi, and I recall the second tutor, Violetta Iotova who returned quite shocked from her experience. She wrote an article about a father of a child with newly diagnosed diabetes. She explained to him what it involves managing the child. That father responded to her: “I have five children to feed and look after other than the one with childhood diabetes, I won’t let you treat him”. She wrote of this experience, and it was rejected by Hormone Research in Pediatrics, because it contradicted the ethics of the editor.
Zacharin: Which is the question that I am asking all of us. And there is no answer to it, clearly. I think the answer will shift, as there is more capacity for education, better nutrition, and better access to medicines in many places. So it becomes realistic to have changes. I was very impressed in India, when I was visiting a small outlying hospital in country in Northern India run by Catholic nuns, who treated a host of children daily. On one day, there was a child being carried by his parents, who clearly had tetanus. They offered the mother vaccination with possible palliative care to this child, but the parents were unable to accept that and went home. I asked the nun, who did not make any attempt to impose her ethics on the family, what would happen? She said, they will go home by the river, because that’s the only possibility for them. She understood, as a woman with high ethical principles that it was totally acceptable, because she was aware that there were variations in life that simply cannot change.
Hochberg: Unfortunately, Abiola is not here. Prof. Abiola Oduwole is a pediatric endocrinologist from Lagos University teaching hospital. For us she is the founder and chief coordinator of the paediatric endocrine training centre in Western Africa, and the founder and mother of all pediatric endocrinology in Africa. As she is not here, she sent us some words.
Abiola Oduwole: How can the burden of disease be fully appreciated? A disease or anything that no one accepts that it exists or where the few who knows of its existence refuses to acknowledge it for different reasons. It is a hard task to quantify or qualify that disease burden accurately. It can only be partial.
Why the lack of or ignoring or shying away from the diagnosis of CAH? Informal research on KPA among the population showed that, most diseases, even when rare is known by the natives but by a vernacular name. However, indeterminate sex gender has no known traditional name. It is like such a thing does not exist on the face of the earth. Why the dead like silence? Usually, the fear of the unknown charted future of what they have observed in the baby creates the silence. Also, lack of knowledge of its origin, why it happened, what to do, custom, religious and belief of the observing individual modulate the response.
The observing individuals are/are most likely one or a combination of the following. The traditional birth attendant or the newly delivered mother or the elderly member/s of the family member who assisted in delivery such as the grandmother or the poorly trained nurse assistant who perhaps is the only medically trained personnel in the community or even a complacent physician. Managing this child with an undetermined gender starts from when the child was delivered. What was the response of those that were there as at that moment? Which gender to allocate the newborn is the initial question? Other questions are simultaneously running through the mind. Such as what to tell the mother and relatives. The background of the parents’ fertility, pregnant history, inheritance issue, where, all had been waiting for a male-gendered baby, acceptance of the child if the observed announcing the truth. The birth attendant in a split second will take the easiest and profitable path by announcing the expected and acceptable gender.
Let us take a step back into the Africa of old using Nigeria as an example. Any child born with an abnormality the relatives either kill immediately or left in the forest without any qualm. An ominous silence is a word. Who wants to invite the wrath of the deity? Until the 1800s in the Eastern part of Nigeria and some other parts too. Mary Slessor a missionary came to that area twins were killed or the stronger of the two preserved and the weaker killed. Whom to blame, such children were thought to bring misfortune. Therefore, killing a child with no gender or conniving with parents and giving the most desired gender by the parents was the norm.
When the modern health delivery system became available, trained midwives became available in the southern part of Nigeria, taking deliveries, recognizing and occasionally archiving births in a record. Despite this advance, gender determination when indeterminate was according to the midwife’s beliefs, religion and culture. The introduction of paediatricians into the health system followed the era, as mentioned above. When parents appreciated that the condition of the child remains peculiar, bring them forward to see the paediatricians. Unfortunately, although seen by the general paediatrician lack of laboratory support and poor knowledge of the problem led to nothing done per se. When the paediatric endocrinologist became available through regular and persistent information on different media platform about DSD, the populace became more knowledgeable and brought their children to see the specialist. After making the diagnosis, the next phase of burden commenced. A necessity to develop a CAH team, make drugs available and regular with affordable, easily accessed laboratory for investigations became the burden.
Through this narration, we can highlight the burden in the African or other low socioeconomic setting countries to the below mentioned. Late hospital presentation at age the child already has a known gender classification by a gender-specific name. Raring which is gender-sensitive for the culture of raring. It prevents proper classification as either a mild non -classical CAH missed at birth or a late-onset CAH. An apparent low prevalence rate gives a picture of a rarity. In the paper by Oyenusi, Oduwole et al. onset was more common in the age group 4-8 years, and some presented very late like 16 years. The children were more of non-classical non-salt-wasting 21 hydroxylase types of CAH. If we take this observation in the contest of previous narration, assuming the severe types died without recognition of diagnosis is appropriate. Alternatively, if delivered death from infection or purposed infanticide ensured non-diagnosis. Usually missed is the male child with CAH because the pride of having a well- endowed male infant prevents special attention paid to the absurd or incongruence with age and size.
Non-acceptance and denial of diagnosis when the obvious that it is a lifelong disease that may need surgery causes a conflict with their beliefs, religion, and culture. Therefore, rejection of diagnosis, noncompliance with drugs, secrecy and non – disclosure to relatives to aid detection of other members or newborn in the family becomes the norm.
Due to poor data collection, the government has no policy in place to help or ameliorate or mitigate sufferings by patient and caretakers.
Laboratory support is abysmal and expensive. In most countries only cortisol, testosterone is available. Paediatric Endocrinologist has learnt to use these parameters for diagnosis and monitoring.
Hydrocortisone is available in only some countries but is expensive, not readily accessible. Most children are on Prednisolone whose strength of either 5 mg or higher makes proper dosing tricky. The result is very erratic.
The high burden for parents and later the young adults as care is out of pocket. Very few countries have a health insurance scheme. When available endocrine disorder not inclusive.
Very few informed medical personnel to cater to millions of people misdiagnosis, non- diagnosis and underdiagnosed is the norm.
In Africa, the era of a child expressing a preference for gender is still rare. Parents pick. The court case of the famous Kenyan athlete who wants to remain untreated and retain the effect of the high testosterone is well known.
It is a high burden disease in Africa for various reasons. Quantifying the burden is at present difficult due to lack of data. No country in Africa knows the true prevalence of all minimally available data is hospital-based.
Ken Ong: I have to propose the line that unavoidable death of any child or infant is unethical. Of course, there are financial considerations, situations where families and communities cannot afford healthcare. Still, it is unethical. The blame is the global distribution or access to healthcare, that is unethical. I am not blaming the parents in that situation, it is not illegal, but it is certainly an unethical situation. In the context where there is lot of financial issues, let alone concerns about identity, illness of the child, conception of the family of course, that’s still unethical, but the blame then shifts more towards the wider family, the community, the society. The third choice, I think Margaret raised, was is it ethical to raise a 46XX child with CAH as male? I think this is a different type of ethical question. I think now in our community, and for many decades, we have challenged the idea of gender, with fluidity and more flexibility in the legal determination, and understanding of gender. And in the last decade, we are overtaken by the sex-less society and a fluidity that was not expected or necessarily wanted. So, I would ask what are the ethical arguments against raising a 46XX individual as male?
Zacharin: Not to pinpoint what your definition of ethics is…..is ethics not related to benefit versus risk?
Ong: Is ethics related to benefit versus risk? I think that ethics is a bit higher than that…
Zacharin: We must accept a certain range of gender issues in the community. Our binary view of gender is now challenged, but when it comes to an infant, where circumstances are so different to our own, we are not so conscious. Is it better to compromise the survival of a family by saving a baby or is it possible that death of an affected individual may sometimes be a better option? I am not saying that it is right or wrong, I am just asking you to think about it.
Herwig Frisch: You mentioned that often the families cannot afford the price of the treatment. So, I am asking, if hydrocortisone is still expensive, especially in India, which produces so many generics. So according to the pharmaceutical companies, would they be motivated to produce this free of charge?
Zacharin: In places like India, the provision of medication is not so much of a problem, it is the timing of presentation for care. The vast majority of these described problems occur in families who reside in insecure environments, where they have little or no access to high quality medical care. Most births are at home, without trained personnel, families lack education and they cannot bring the child to care, or it may take two days on the bus to get there. In Africa, it is even more complicated by views suspicious of western medicine for some-I don’t think that’s an issue in India-. There, largely, if a child gets to a doctor, provision of medication is not a problem.
Frisch: What about vaccinations, which is a much more frequent problem for instance? Is this available in these countries?
Zacharin: Yes, in most places outside Africa, I don’t know about Africa, but in India, again, I think there is more access and belief in benefits of vaccination by families. I don’t think this is something that we can change in one generation, we are trying…
Paul Saenger: I think you mentioned the interest. This is embedded in Indian culture, and while among Indian physicians nobody is taking this on, it still happens. When you look at legal implications, it is not even specified according to the inheritance rules, how much goes to males how much goes to the female, and the intersex child is settled in between. So this is going on for a long-time. Even the Indian physicians they are descriptive, but they are not providing any solution. Price is not the issue, it is the stigma of the condition. And it is very difficult to grab this.
Michael Ranke: There are two issues. One is of course the complicated issue of the gender assignment that it’s going on, and the other, simpler issue is provision of medications and medicine itself. And I think that as we talk about the ethics, ethics of course always depend on the social and environmental circumstance, and we know this. But I think the issue whether medication is available to mankind at a reasonable price, is an issue of ethics beyond the issue of the locals. It is our issue and most probably the cost of this meeting here would be enough to provide everybody the fludrocortisone and all of the rest of rare endocrine disease with drugs. That’s something we never really discussed in our endocrine society, and we are going with new, less important development such as long-acting GH.
Zacharin: I think this is an enormously important topic for institutions such as ESPE to address, because it is something that we can address, and we can put pressure upon WHO to do more than tick boxes. These are essential medications, and we do nothing for that, other than give lip service to it. As individuals we can clearly make an impact, which will allow improved care for a few, but as a group we can make demands that have the capacity to benefit many.
It does not alter the fact that there are thousands of other issues. If a family goes to the witch doctor, no one has medication that will cure that problem. Access to anything, for example insulin, in many of these communities is intermittent, brands and durations of action are different, distribution and cost may be overriding factors. As a group, we should attempt to try to make an impact. The pediatric endocrine group (GPED), with JP Chanoine as secretary general at the moment, is making efforts, but it is a very small group. Ff we can engage the larger community of endocrinologists that would be great.
Hochberg: The word ethics was used today more than usual for in pediatric endocrinologists, and of course ethics changes with the environment. The question is if we as a group of doctors caring for other people, and as scientists from well-off countries, if we should discuss ethics for families who do not have the means, the knowledge, the education. And if what we do, writing books about pediatric endocrinology, organizing pediatric endocrine training centre in Africa, if this is something we need, or if we should change the content of them. From the very beginning of PETCA, some of our colleagues were sceptical: “I am against it, because once you go and teach all this sophisticated endocrinology, genetics etc for people who cannot afford to do any of it, this is unethical to me”. From the very beginning these colleagues refused to take part in our Africa activity. And this is what we must discuss in the future.