I Underwent a Genetic Counselling Course and my views about SCD prevention changed forever!

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Mrs. F. F Salami receiving GC Certificate from Professor Olu Akinyanju, Chairman, Sickle Cell Foundation (Nigeria)

Anambra Sickle Cell Law Loses Staunch Supporter

A Registered Nurse/Midwife, Registered Nurse Educator/Administrator and Fellow of the West African College of Nursing, Mrs. Falilat Funmilayo Salami always thought she had a problem on her hands if her children should marry ‘wrong’. Two of them are carriers of the sickle cell gene (HbAS) and one is with sickle cell anaemia (HbSS). Like her, her husband, Group Captain M. O. Salami (rtd) is a carrier too. You could say the Salamis home is a home of sickle cell carriers! Only one son has the almighty HbAA.

When Anambra State, Nigeria, came up with a Law discouraging – criminalizing, actually – sickle cell carriers from marriage (nearby Abia State has a similar Law, without the threat of a jail term), Mrs. Salami was body and soul for it, moreso for having raised a child with sickle cell.

‘I’ve seen so much of the suffering elicited by SCD in my career as a nurse,’ Mrs. Salami once commented, ‘not to back such a Law.’

In her family life, she had drummed it into her children who were carriers of the sickle gene to be careful in choosing a partner: in short, the unwritten law for them was, avoid AS, go for AA.

Epiphany

Two weeks at an intensive training for Genetic Counsellors in Lagos, and Mrs. Salami had a drastic change of heart, an epiphany. She had held the notion virtually all her life that carriers of the sickle gene must somehow be excused from marrying other carriers to stem the physical, emotional and financial pain of having sickle cell anaemia at home.

In this interview, Mrs. Salami reveals her new-found convictions …

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What preconceived ideas about SCD did you take to the Genetic Counselling Training Course?

The preconceived ideas about SCD that I took with me to the GCTC training was this: that we can only eradicate SCD by not allowing two traits (at risk people) to get married. That was why I was one of those who initially supported the Anambra State Law prohibiting such marriages. I have come to now realize that it is a breach of fundamental human rights. To quote Prof. Olu Akinyanju ‘you do not marry genotype, you marry a human being that you love.’

I found out during the intensive training that science has made it possible for at risk individual to have;

  1. Prenatal diagnosis to determine the genotype of their unborn child and make informed decision.
  2. Do a pre-implantation genetic diagnosis by selecting the genotype of the baby through In Vitro Fertilization (IVF).

So there is no need for a draconian law that has failed in other countries as it resulted in couples presenting fake genotype results to suit their needs.

How easy was it for you to give up on your prior convictions?

It was easy for me to give up my preconceived notions because of the in-depth training that focuses on the principles of genetic counseling which should be;

  1. Informative – with accurate, full and unbiased information.
  2. Non-directive- by providing accurate, full and unbiased information that will offer guidance but also allows affected individuals and families to make their own decisions without being guided or forced.
  3. Confidential- so that the client is assured that his/her privacy is kept and respected to encourage full disclosure and create a trusting and beneficial relationship with the Counselor.
  4. Supportive – by helping the client to explore self, feelings, attitudes and value without being judgmental so that the client can feel secure to discuss possible consequences of his/her decision as well as respecting the right to make an informed decision. This will make client happy and will also prevent stigmatization.
Group Captain M.O Salami and Mrs. F.F Salami receiving GC Certificate from Prof Akinyanju

Do you agree in toto with everything you learnt at the GCTC or do you have any reservations?

I agree entirely with most of the things I learnt at the GCTC training, however I have a personal reservation on the discouragement on the use of a particular nutritional supplement which I have found to boost the hemoglobin level of people with Sickle Cell Anemia (SCA) I know. The supplement is derived from stalk of grains that we consume everyday in Nigeria and therefore carry no risk of toxicity or adverse drug reaction. There are scientific publications and clinical trials on the nutritional supplement.

Did you express your objections to the Foundation’s views concerning the supplement?

I did not object to the foundation’s views concerning the supplement. It was just the personal opinion of the ‘expert’. However I will not discourage my clients from using it if it works for them.

You practically encouraged all your children – who are carriers of the sickle cell gene – to marry ‘AA’. In view of what you know now about non-directive counseling, would you say it was a mistake to encourage them to marry AA?

In view of what I know now about non-directive counselling, I will leave clients to make an informed decision if they want to go ahead with the union in spite of their carrier status. However I do not regret my decision on my immediate family because it is also my personal decision to prevent them going through what we all went through as caregivers.

Some Genetic Counsellors return home holding fast to their pre-training ideas, still discouraging their own children/family members who are carriers of the sickle gene from marrying carriers. Do you blame them?

If some Genetic Counsellors return home holding fast to their pre-training ideas, then learning has not taken place because there is no change in behaviour in those counsellors and it is a pity and a waste of time in acquiring the training.

I do not think that SCD prevalence will worsen in Nigeria because there are other choices available in Pre-Natal diagnosis and Pre Implantation genotype selection. These are better options than carriers faking their genotype results to get married. This happened in Cyprus when people were circumventing the law banning marriages between two carriers.

Some years ago, a medical officer with the SCFN (name withheld) underwent the genetic counseling training. She was so disgusted with the training, especially the idea  that she described it as ‘indoctrination’. Do you agree or disagree with her?

I totally disagree with the said Doctor about the training being an indoctrination because every knowledge about Genetic Counselling was based on evidence in Research. I feel she should relinquish her certificate to the Foundation if she does not believe in the training.

 Don’t you think if everyone married according to the precepts you learned, SCD prevalence in Nigeria will worsen? If marrying an individual you love (according to Prof Akinyanju) puts you and your offspring in trouble and anguish, of what value is this kind of doctrine in a resource-poor setting like Nigeria?

In a resource poor setting like Nigeria, education of the community on genotype awareness to enable them make informed decisions is paramount.

Government should come in by creating greater awareness, making health insurance available and affordable – and fund research into finding a cure.

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