Genetics and Consanguinity
Related Dispatches: When Cousins Marry
If you have a medical question for Doctor Alidina, please send it via the Comments box at the bottom of this page. We will publish a selection of the doctor's replies on Thursday 26th August. The doctor cannot respond to all questions and he is unable to enter into direct correspondence.
Dr Alidina writes:
I am a salaried General Practitioner at the Balsall Heath Health Centre with Dr. Mohamed Walji (Principle GP) and colleagues working in an inner city practice in the Heart of Birmingham. Our surgery serves a large number of South Asians where the practice cousin marriages are not uncommon.
As doctors, we understand the medical evidence that links consanguinity (marriage between first or second cousins) with a higher than normal risk of having children with genetic abnormalities.
'Medical duty to highlight these risks'
Dr Walji has campaigned for the last 20 years within his local community to discourage cousin marriages. With the support of his local mosque and clergy, he has had some success. We have seen a significant drop in the number of patients from the East African community marrying their first cousin. He feels, as a fellow British Muslim, that it is his medical duty to highlight these risks and I have followed in his footsteps to assist his work.
Cousin marriage is a very difficult subject to broach and it most commonly practiced amongst Asian families. As a fellow British Muslim, I feel passionately about increasing the genetic literacy. We must inform ourselves of the risks before embarking on such unions. This enables informed reproductive choices and raises genetic literacy in general.
Pilot Project
We have embarked on a pilot project which is in collaboration with the Clinical Genetics Department at the Birmingham Women's Hospital, The National Genetics Education and Development Centre and the Heart of Birmingham Training Primary Care Trust.
We aim to test all our patients over the age of 16 for blood born genetic conditions such as Thalassaemia and Sickle Cell anaemia. All the patients are informed of their results and those who are carriers are counselled and referred to the Clinical Genetics Department where required.
Cascade testing is conducted in these carriers and a family pedigree drawn and recorded in the clinical notes. We encourage testing partners even tough they may not be related to equate the risk of transmission to the future generation. It is at this time when we broach the subject of consanguinity and explain the risks of first cousin marriages especially to those who are about to embark on relationships or have children. A similar approach is taken for those patients who have been identified as affected or carriers of other genetic illness.
What Happens Next: Counselling
We proactively counsel those who are found to be carriers by advising them to avoid getting married to other carriers and avoid cousin marriages. The discussion about consanguinity comes as part of the counselling because the risks of genetic illnesses are higher in essence in first cousin marriages.
By talking to patients and highlighting the facts that first cousin marriages doubles the relative risk of a genetic illness in a child, the message does hit home. When they understand that, as carriers, marrying other likely carriers (which inevitably first cousins will be), they have a one in four chance of passing the diseased gene or mutation to their children and a one in two chance of having children who will be carriers like themselves, they realise the risk is too great. I think General Practitioners are better suited to conduct these consultations because they know their patients, are usually from or familiar with the community and have built a rapport and trust with them.
We believe the medical facts and potential suffering is discouraging in itself, when considering a cousin marriage. Islam doesn't forbid such practices but the misconception is that it encourages it. There are several sayings from the Prophet Mohamed (peace be upon him) which highlights the disadvantages of such marriages.
We, as doctors, see the repercussions of genetic illnesses and the effect it has not only on the child, but also to the parents and society in general. An affected patient has to undergo several hospital appointments, often painful procedures like blood transfusions in the case of Thalassaemia, bone marrow transplants or intrusive and aggressive surgeries on very young children. We witness their siblings having to go through testing to make sure they are not carriers or to see if they could be a donor when their brothers or sisters are going through bone marrow transplants for instance.
'Increased levels of anxiety and depression for the parents'
Tragically, we also see the heartache the family have to go through, through the pregnancy, because they have then been informed of the risk and the burden of disease on the family. Invariably, the disability that the genetic condition will cause creates increased levels of anxiety and depression for the parents together with forcing one of them to give up their work and career to look after the affected child thus affecting the financial situation of that family.
There are also huge financial consequences involved in looking after a child disabled with a genetic condition due to the social and medical care required to support them and these have a significant impact to the society as a whole particularly at national and local levels and questions the equitable use of limited resources when such diseases can be prevented with education.
If you have a medical question for Doctor Alidina, please send it via the Comments box below. We will publish a selection of the doctor's replies on Thursday 26th August. The doctor cannot respond to all questions and he is unable to enter into direct correspondence.
