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Rapid Responses: Rapid Responses published:
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Civil Society and Genetic Screening Programmes
- Kawaldip Sehmi (16 November 2004)
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Egypt Leading Experience Premarital Tests
- Dr/ Tarek Rashed Khater (20 November 2004)
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Kawaldip Sehmi, Director-Health Ineqaulities 211 Old Street London EC1V 9NR
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When three authors, who have collaborated with or shared academic forums/ platforms with a community genetics emeritus professor, write an editorial exalting the merits of a community genetics programme from the Islamic Republic of Iran and want to implement it in “high-income” countries then there must be some close scrutiny on the merits of such a programme and the recommendations being made. However, when they then want to foist this upon the black and minority ethnic groups in Britain, then this is a matter of great import that the black and minority community review the recommendations being made. The editorial purports to recommend that: “screening programmes must consider societal values” and then goes on to say that the Islamic Republic of Iran (when discussing national health programmes in reputed journals, there is a diplomatic protocol to refer to a country by its registered name at the UN) provides lessons for high income countries and especially: “for example, countries with minority ethnic communities like the United Kingdom”. The question that we in the black and minority ethnic community organisations in Britain ask is: What pray are the common societal values between the Islamic Republic of Iran and the British based (sometimes third and fourth generation) black and minority ethnic groups? Dangerously and some may say leaning towards recommending serious breaches of human rights to the public health authorities, the authors say that one of the reasons why “Western countries” (they change the original terminology from “high-income countries” to “Western Countries”- a very clever change of inflection!) may be slow to adopt population based genetic screening may be our: “ emphasis on the libertarian and individualistic meaning of “informed choice” without linking societal debate to issues of public’s health and resources” The Islamic Republic of Iran has its own societal values based upon Shia Islam and its own Shia Figh (Schools of Jurisprudence) that influence public and private life there. Its public life places a very heavy reliance upon the Imams and their interpretation and deliberations of civil law. The political life of this Shia Islamic Republic is different from that in the Sunni Islamic Republics (where a majority of Muslims live). The Shia Imams have a strong say and play a big role in public health and can carry a lot of authority in implementing public health programmes. They have served that society well and even when, in the interest of preserving public morality, the Imams in Iran have produced quirky legal devices like the “Mu’ta” or “temporary” marriages to facilitate co-habitation. But the Islamic Republic of Iran is not Britain! The recommendations that think we are too libertarian and individualistic in respecting “informed choice” in offering genetic counselling programmes come from rarefied atmosphere of the corridors of academia. They do not understand the concept of “social capital” and the role of community organisations and networks in developing public health programmes. In Britain, the civil society is strong and we will not respond to dictates like the Iranian society. The recent consultation on the White Paper on Public Health is a testament to that. Many black and minority ethnic groups participated and collaborated on it. The Muslim Health Network even led some of the stages (www.muslimhealthnetwork.org/news.shtml). The first global treaty on Public Health, The WHO Framework Convention on Tobacco Control, signed in May 2003 recognised that the civil society in each country has an enormous role to play in delivering public health programmes. As a last word, taking lock, stock and barrel solutions from the developed world and implementing them upon the less developed world is as unpalatable and unworkable as the taking of a genetic screening programme from a less developed world with a weak civil society and implementing it upon a developed world! 1. Christianson A, Streetly A and Darr A Lessons from thalassaemia screening in Iran- Screening programmes must consider societal values BMJ 2004;329:1115-1117 (13 November) 2. Samavat A and Modell B Iranian national thalassaemia screening programme BMJ 2004;329:1134-1137 (13 November) 3. Darr A and Modell B Science and society: genetic counselling and customary consanguineous marriage Nat Rev Genet. 2002 Mar;3(3):225-9 4. Darr A and Modell B The frequency of consanguineous marriage among British Pakistanis J Med Genet. 1988 Mar;25(3):186-90. 5. Christianson A and Modell B Medical genetics in developing countries. Annu Rev Genomics Hum Genet. 2004;5:219-65 6. Report from the RCGP Virtual Genetics Group Inaugural Meeting at the King’s Fund on Tuesday 25th September, 2001. (CLINICAL AND SPECIAL PROJECTS NETWORK- Genetics Group) www.rcgp.org.uk/clinspec/genetics_group/report.asp 7. WHO Framework Convention on Tobacco Control www.who.int/tobacco/framework/en/fctc_booklet_english.pdf Competing interests: Former Campaign manager of the Thalassaemia Asian Awareness Campaign run by the UK Thalassaemia Society from a grant by the National Lottery Fund |
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Dr/ Tarek Rashed Khater, Director, PCC-NIH & Representative, NCHPEG http://myprofile.cos.com/tarek_khater Premarriage Checkup Center, Nasser Institute Hotpital, Cairo, Egypt
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Premarriage Checkup Center in Nasser Institute Hospital "PCC-NIH" & Egyptian Pediatric Genetic Society are the first arab members to be added to the National Coalition for Heathe Profissional Education in Genetics that work to let the genetics grow Aimed Sector:1. Youth of both gender going to be married for full premarital checkup and genetic counseling. 2. Pregnant mothers that have a risky pregnancy to get babies with inherited diseases. To do prenatal diagnoses tests. 3. Couples had a child with inherited disease for diagnosis and treatment; and do genetic counseling for assessment of recurrence risk rate in next pregnancy. 4. Couples had general health problems that may affect the marriage for advice and treatment. Our Goals: I. Prevention
B - Genetic Counseling : 1. For consanguineous marriage and families with offspring family history of inherited diseases. Premarital genetic counseling (do a pedigree on 3 levels and determine the possibility of genetic diseases in the offspring of this marriage and prove it by genetic testing in case of need. 2. Prenatal diagnosis in risky marriage. 3. Determine recurrence risk. 4. Diagnosis and treatment of affected child. C - Full Medical Report: 1. General health. 2. Reproductive health. 3. Genetic Counseling. "We Don't influence the marriage decision". II. Education: Communication with youth which increased the awarness for genetics and genome revolution era, through: 1.
Our website: Education, orientation and answer the questions of youth by consultants in every branch through our website on the internet. Websites: Premarriage Checkup Center Social Aim:1. Decrease the Handicapped Children rate in our country 2. Decrease the rate of divorce in new families that has been reached 34.5%. 3.Change the attitude of the community as regard the increased birth rate problem to be quality not quantity. 4.Change the attitude of consanguineous marriage in the area. 5.Change the bad attitude as female genital circumcision. 6. Introduction of sex education that is a dilemma in the area.
Religion view: "Do Not be shy, go now", Voice Of Al-Azhar, Magazine
History: Pharaohs papyrus say that Premarital Checkup was an Ancient Egyptian procedure.
Membership:
NCHPEG www.nchpeg.org
& EPGS www.epgs.1hh.com
Competing interests:
None declared |
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