Dear Avinash, Kudos again for highlighting an important aspect of causes of inborn disability.
For the start, I am more worried about my fellow Indians. I have researched and could not find reliable data on 1. How much percent of disables acquired disability on account of genetic disorders? 2. Does Gotra differentiation for marriages actually ensures genetic diversity at least in north India? 3. Do we have more disabled people in central and south India, as consanguine marriages are rampant there? 4. How many NGOs or organisations working in the field of disability have focused sensitisation or action plan on genetics? Sadly, our existent medical regulations don’t encourage genetic research to find treatment to these problems. On 7/8/15, avinash shahi <shahi88avin...@gmail.com> wrote: > By Steven Swinford, Deputy Political Editor > http://www.telegraph.co.uk/news/health/children/11723308/First-cousin-marriages-in-Pakistani-communities-leading-to-appalling-disabilities-among-children.html > 5:33PM BST 07 Jul 2015 > > CoCouples who are getting married should be forced to have a DNA test > first to ensure they are not cousins amid growing concern about incest > within Pakistani communities, Britain's first Asian peer has claimed. > > > Baroness Flather, a former Tory who now sits as a cross-bencher, said > in the House of Lords that it is "absolutely appalling" that first > cousin marriages in Pakistani communities are leading to "so much > disability among children". > > > She said: "There are a lot of first-cousin marriages in certain > communities, particularly among Pakistanis who come from the Pakistani > Kashmir area. We know so much about DNA now, but there is so much > disability among the children, which is absolutely appalling. > > > "You go to any such family and there will be four or five children, at > least one or two of whom will have some disability. That is absolutely > unacceptable, and if we cannot do anything about it, is it fair to the > children?" > > > Baroness Flather, a former barrister who was born in the Pakistani > city of Lahore when it was part of India, said: "Never mind the > parents — it is not fair to the children that they should be allowed > to become disabled because of a social practice. It is a social > practice which does not belong in today’s age, when we know so much > about DNA. There should at least be some rule which says that you must > have a DNA examination before your marriage can be registered." > > > First-cousin marriages, which are are legal in the UK, are practised > within Britain’s Pakistani community, as well as among some Arab and > African families. Medical data previously suggested that while British > Pakistanis were responsible for 3 per cent of all births, they > accounted for 30 per cent of British children born with a genetic > illness. > > The noble Baroness Flather also raised concerns about Sharia law, > under which women struggle to get a divorce. > > She said: "I know I am probably talking about Muslims, but we now have > this business of sharia marriages. It is appalling that the man can > get a divorce by just asking for it, while a woman may have to wait > years, and may still not get it. She can get a British divorce, but > not a sharia divorce. > > Noble Lords may ask, “Why does that matter?”, and I asked that of > those women. They replied, “It means that we can’t go to Pakistan”. > > "If they go there, the husband can come and take the children away, no > matter what age they are. In any case, the husband can take the > children from a sharia marriage when they are seven. All marriages > should be automatically registered in this country. It is not fair to > the women that some British women — they are British women when they > come here — are treated in a different and unacceptable way from > others." > > > On 6/13/15, Ekinath Khedekar <ekin...@gmail.com> wrote: >> Thank you for a very important article Avinash. >> >> You may have noticed upon any celebratory email from disable marriage >> gathering by any organisation, I ask a question if they are going to >> or have sensitised participants about genetic risks of such marriages. >> >> Till date, I have never received reply in affirmative. It is very sad. >> >> I hope you will keep your eye on such blind marriages literally. To >> re-iterate, nothing wrong if couple suffering with genetic disorders >> knowingly take a risk to go for children. That is their personal >> choice, but organisations have a moral and a professional >> responsibility to make their participants know about this factor. >> >> Cheers >> >> >> >> >> >> >> On 6/12/15, avinash shahi <shahi88avin...@gmail.com> wrote: >>> This article is very productive and enlightening. The casuistry >>> provided by the author for avoiding such marriages is quite >>> convincing. We have several families where more than one-persons >>> acquire disability due to genetic antecedent. And the most of such >>> cases are presumably found in muslim families and in the south Indian >>> states. It would be great if somebody attempts to write a paper >>> highlighting the social profile of families consisting of more than >>> one disabled people. >>> >>> http://www.thehindu.com/seta/2004/04/29/stories/2004042900161600.htm >>> >>> >>> Problems with consanguineous marriages >>> >>> >>> >>> >>> >>> BLOOD RELATED marriages are called consanguineous marriages — sanguine >>> meaning blood. >>> >>> Around the globe consanguineous marriages have been practised by many >>> societies from time immemorial. It is widely practiced in Asia, North >>> Africa, Switzerland, Middle East, some parts of China, Japan and >>> fishermen communities in Europe and America. One in two rural >>> marriages in Tamil Nadu and Andhra Pradesh are consanguineous. >>> >>> What type of marriages are consanguineous marriages? When you marry >>> biologically related or blood relatives then it is consanguineous >>> marriage. Most commonly in our part of the world, first cousins — >>> uncle's son marries auntie's daughter or vice versa. >>> >>> However another type of marriage is where maternal uncle marries his >>> niece (sister's daughter). Theoretical risk of having a genetic defect >>> child is higher in the latter type of marriage than the former. Most >>> of us do not even recognize the pros and cons of such marriages. >>> >>> While assessing the consequence of consanguineous against >>> non-consanguineous (non-blood related) marriages in health and >>> disease, several scientific studies have shown that consanguinity >>> leads to death of infants before, during or immediately after birth, >>> increased incidence of birth defects, genetic diseases including >>> blinding disorders, blood cancer (acute lymphocytic leukemia), >>> breathing problems for children at birth (apnea), increased >>> susceptibility to disease etc. >>> >>> Some scientists contradict these studies and state that other >>> biological factors could be accountable for the results and not >>> consanguinity alone. >>> >>> In our study we showed that consanguinity could increase the incidence >>> of many blinding disorders like retinitis pigmentosa, Leber congenital >>> amaurosis, Lawrence-Moon-Bardet-Biedl syndrome, Stargardt disease, >>> Usher syndrome etc (Consanguinity and Ocular Genetic Diseases in South >>> India: Analysis of a Five-year study. Community Genetics: >>> 2002:5:180-185). Consanguinity could increase the risk of inheriting >>> any one of the 4968 (autosomal recessive) genetic diseases that could >>> affect any part of the body from head to foot. >>> >>> Some animal studies have shown that inbreeding or consanguinity could >>> enhance longevity. It has been proved beyond doubt that consanguineous >>> marriages farther than second cousins would not result in major >>> genetic diseases. >>> >>> There are certain misconceptions regarding marriages amongst >>> relatives, marriages between social relatives like wife's brother and >>> husband's sister can get married, where there is no role for blood >>> relationship. >>> >>> Why do consanguineous marriages result in children with genetic >>> diseases? Due to inheritance parents and children, and brothers and >>> sisters, commonly share 50 per cent of their genetic make-up. >>> >>> Similarly uncle and niece share 25 per cent and first cousins 12.5 per >>> cent of their inherited genetic material as it originates from a >>> common ancestor. In such situations if there are any `silent' genetic >>> defects, then such errors manifesting as a disease in the child of a >>> consanguineous parents is high. >>> >>> Whereas, if we marry a person non-consanguineously in a random manner, >>> then for both the partners to share the same `silent' genetic defect >>> is extremely rare. >>> >>> Hindus in northern India as a practice outlaw the consanguineous >>> marriage by avoiding the same `gothra' or patrilineal relationship >>> between the probable bride and the groom. In some of the western >>> countries including the United States consanguinity closer than the >>> first cousins are considered to be legally incest. >>> >>> Historically closest consanguineous marriage was performed between >>> brothers and sisters by the Egyptian Pharaohs to preserve the royal >>> blood and interestingly Cleopatra was born out of such marriage. >>> However this disgusting practice has never been duplicated anywhere >>> else in the world. >>> >>> It is sad to note that many movies in Tamil Nadu and Andhra Pradesh >>> highlight and glorify consanguinity. Evidence suggests that >>> consanguinity does play a negative role in human health. The social >>> benefits of consanguinity should not outweigh the biological damages; >>> many in the community are ignorant about these facts. >>> >>> G. Kumaramanickavel >>> >>> >>> >>> G. Kumaramanickavel >>> >>> >>> >>> Sankara Nethralaya >>> Chennai >>> >>> >>> Read more studies on the issues >>> 1 >>> http://www.thehindu.com/sci-tech/health/the-biology-of-first-cousin-marriages/article4902050.ece >>> 2 >>> http://www.thehindu.com/news/cities/Tiruchirapalli/consanguineous-marriages-are-a-major-cause-of-hearing-loss-among-children/article5061498.ece >>> >>> >>> >>> -- >>> Avinash Shahi >>> Doctoral student at Centre for Law and Governance JNU >>> >>> >>> >>> Register at the dedicated AccessIndia list for discussing accessibility >>> of >>> mobile phones / Tabs on: >>> http://mail.accessindia.org.in/mailman/listinfo/mobile.accessindia_accessindia.org.in >>> >>> >>> Search for old postings at: >>> http://www.mail-archive.com/accessindia@accessindia.org.in/ >>> >>> To unsubscribe send a message to >>> accessindia-requ...@accessindia.org.in >>> with the subject unsubscribe. >>> >>> To change your subscription to digest mode or make any other changes, >>> please >>> visit the list home page at >>> http://accessindia.org.in/mailman/listinfo/accessindia_accessindia.org.in >>> >>> >>> Disclaimer: >>> 1. Contents of the mails, factual, or otherwise, reflect the thinking of >>> the >>> person sending the mail and AI in no way relates itself to its veracity; >>> >>> 2. AI cannot be held liable for any commission/omission based on the >>> mails >>> sent through this mailing list.. >>> >> >> >> -- >> *************** >> >> "I am only one, but I am one. I cannot do everything, but I can do >> something. And because I cannot do everything, I will not refuse to do >> the something I can do. What I can do, I should do. And what I should >> do, by the grace of God, I will do." >> EDWARD EVERETT HALE. >> >> >> >> Register at the dedicated AccessIndia list for discussing accessibility of >> mobile phones / Tabs on: >> http://mail.accessindia.org.in/mailman/listinfo/mobile.accessindia_accessindia.org.in >> >> >> Search for old postings at: >> http://www.mail-archive.com/accessindia@accessindia.org.in/ >> >> To unsubscribe send a message to >> accessindia-requ...@accessindia.org.in >> with the subject unsubscribe. >> >> To change your subscription to digest mode or make any other changes, >> please >> visit the list home page at >> http://accessindia.org.in/mailman/listinfo/accessindia_accessindia.org.in >> >> >> Disclaimer: >> 1. Contents of the mails, factual, or otherwise, reflect the thinking of >> the >> person sending the mail and AI in no way relates itself to its veracity; >> >> 2. AI cannot be held liable for any commission/omission based on the mails >> sent through this mailing list.. >> > > > -- > Avinash Shahi > Doctoral student at Centre for Law and Governance JNU > > > > Register at the dedicated AccessIndia list for discussing accessibility of > mobile phones / Tabs on: > http://mail.accessindia.org.in/mailman/listinfo/mobile.accessindia_accessindia.org.in > > > Search for old postings at: > http://www.mail-archive.com/accessindia@accessindia.org.in/ > > To unsubscribe send a message to > accessindia-requ...@accessindia.org.in > with the subject unsubscribe. > > To change your subscription to digest mode or make any other changes, please > visit the list home page at > http://accessindia.org.in/mailman/listinfo/accessindia_accessindia.org.in > > > Disclaimer: > 1. Contents of the mails, factual, or otherwise, reflect the thinking of the > person sending the mail and AI in no way relates itself to its veracity; > > 2. AI cannot be held liable for any commission/omission based on the mails > sent through this mailing list.. > -- *************** "I am only one, but I am one. I cannot do everything, but I can do something. And because I cannot do everything, I will not refuse to do the something I can do. What I can do, I should do. And what I should do, by the grace of God, I will do." EDWARD EVERETT HALE. Register at the dedicated AccessIndia list for discussing accessibility of mobile phones / Tabs on: http://mail.accessindia.org.in/mailman/listinfo/mobile.accessindia_accessindia.org.in Search for old postings at: http://www.mail-archive.com/accessindia@accessindia.org.in/ To unsubscribe send a message to accessindia-requ...@accessindia.org.in with the subject unsubscribe. To change your subscription to digest mode or make any other changes, please visit the list home page at http://accessindia.org.in/mailman/listinfo/accessindia_accessindia.org.in Disclaimer: 1. Contents of the mails, factual, or otherwise, reflect the thinking of the person sending the mail and AI in no way relates itself to its veracity; 2. AI cannot be held liable for any commission/omission based on the mails sent through this mailing list..
