Pioneering Genetics in Ghana: A Groundbreaking Journey. Demystifying Genetics with Ahmed-Sherrif Kanvela Yussif

Hello. This podcast is called Demystifying Genetics. I am your host, Matt Burgess.

In this podcast, I talk with genetic counsellor Ahmed Sharif Kenvele Youssef, who recently graduated and became one of the first genetic counsellors in his native country of Ghana. Unfortunately, our internet connection wasn't the best, but join us for a very interesting conversation. As always, thank you to my editor, Angelica, and to our main podcast sponsor, Track Gene. Hello, Ahmed, and welcome to the podcast. Right. Thank you so much, and I'm so glad to be here. Yes, it's exciting having

you. You're my very first guest from Ghana. Interesting. What has taken you so long? I know. I'm so sorry. I need to sort of get my skates on. But it's very exciting to have you. And speaking of first, you're actually the first genetic counsellor in Ghana. Yes, I am. I am with other three people. So, yes. Congratulations.

Thank you. um yeah tell me about genetic counseling in ghana how i mean you've only just sort of started your job because you graduated not that long ago are you sort of setting up a service in your country or was there sort of a job that was existing i think we still setting up honestly, and that's because we recently had the Allied Health.

Professions Council of Ghana to include the regulation of genetic counseling into its practice and so everything is still a bit fresh and new and as funny as we are trying as much as possible to do a lot of the groundwork so that when those coming after us are in the system they wouldn't have to work as hard as we had to.

Yes but so far it's been amazing it's been eye-opening it's been challenging but that's why it takes to be a pioneer yeah yeah i can relate because in my first job even though it was in australia and genetic counseling was established i my first job was sort of in a rural community and they hadn't had a service for about 18 months and okay i felt like, you know, I was ready to do my job, but before I could do my job, I had to kind of set everything up.

And it's like, oh, first I have to set it up and then I can start seeing patients. And it was kind of like, no, I'm just ready to start. Right.

Yeah. Yeah. And so I see that you were a teacher before you started genetic counselling. How did your career as a teacher sort of influence you to leave teaching and to study genetic counselling? Okay, so I think I would like to start from where I first head of genetic counselling. Sure. And so, I mean, I have a bachelor's degree in biotechnology and molecular biology.

And the first time I head of genetic counselling was in a lecture where one of my lecturers at the time was teaching ethics and biotechnology, I think, and mentioned genetic counseling when we're talking of. And so, like I was saying, I first heard of genetic counseling during my undergrad days, where I studied biotechnology and molecular biology. So in this particular lecture on ethics and biotechnology, we were talking about sister reproduction.

And then the lecturer mentioned genetic counseling, that is something couples could do before they went in for their assisted reproductive techniques. And I got intrigued about what it was because counseling and genetics are trying to find what was going to be the relationship. But I didn't think too much of it. Then after uni, I went into teaching in an underserved community because at the time I don't necessarily enjoy the molecular work. That's like the laboratory part of stuff.

And so I wanted something that would allow me still do genetics, but not in terms of being in the lab. And so I felt teaching was something that would help me still talk about genetics and all the things I cared about, but it meant I didn't have to be in the lab. It was more like an escape, right? I go into this community, which is a rural community, and I have a student that before they could write on the wall, they would struggle. So we used to use blackboards, right?

And before they could write, they would struggle. So through reading, I realized that what they had was dysgraphia. And then I thought that then such a student was not necessarily meant to be in like the mainstream school. Maybe they had to be like a special school or something. So I've always wanted to do science that wasn't lab based.

And so even before I went into genetic counseling, I had thought that after teaching, I would do maybe scientific communication or something or scientific journalism. And then I came across genetic counseling being started in West Africa.

And i was intrigued and also i felt it was a way i could use to educate the community about genetic conditions now this is because as i was teaching in a rural community there were students i had that had albinism had where or what they genetic causes or if they were even genetically like cost and so sometimes students would fear and so I was able to see genetic counseling as an avenue I could use to educate genetic conditions but teaching gave me skills which I still use in

genetic counseling because in genetic counseling we are meant to explain these conditions to patients in a very simplistic way and the ability to explain things I had that skill from teaching and so that's how I married the two ah excellent I I just love you know we're all genetic counselors and but you're on the other side of the world to me in a country that has culture that is completely different and, you know. We're actually sort of quite different.

But then your story is very similar to a lot of genetic counselors. Like we love science, but we don't necessarily want to work in the lab. In the lab, right. Yeah. We sort of are trying to find something else that we can do with our genetics knowledge. Yes. Yeah. So how did the genetic counselling course in Ghana come about? Did the government sort of see a need and approach a university to sort of create the course?

No. So how it came about was the WHO in 2016 had a world assembly and had things that needed to be carried out. Now, on top of my head, I don't really remember exactly what was in the assembly or what the member states were supposed to do. But I know based on one of those requirements or things that were supposed to be done, some members of the University of Ghana wrote to the World Bank to establish the West African Genetic Medicine Center.

And they saw this medicine center as more like an avenue they could use to solve developmental health challenges of the region, the West African sub-region. And so under that came the need for the genetic counseling program. And so the program at the start was funded by the World Bank. Wow. Because they saw the need to have this program to help in solving our major developmental health challenge has always been the sickle cell disease.

Because in Ghana, annually, about 882,000 newborns are recorded annually. And 2% of these births are diagnosed with sickle cell. Wow. The last time I checked, the career frequency at birth was somewhere around 13%. And so there was a need to have genetic counseling again because the WHO had said in 2016 or it had been reported in 2016 that genetic counseling was a cost-effective intervention to reduce the burden of sickle cell.

In the sub-region. And so, yes, there was a need for the course, looking at the statistics.

Wow. Okay. So, yeah, let's talk about sickle cell disease. You know, it's a recessive condition, and you said that the carrier frequency in your country is quite high. I guess, you know, as genetic counsellors, we understand the importance or the need for premarital genetic counselling or, you know, preconception genetic counselling. But I kind of think in Australia, it's not something that genetic counsellors actually do a lot.

Like maybe it's something that couples sort of speak to their general practitioners about. But in your experience, in your country, is that a big part of your role as a genetic counsellor? Yes, to some extent. Now, I say to some extent because the profession has just started. So even if people wanted to access primarital genetic counseling services, we did not have genetic counselors until the introduction of the program in 2021.

And so what used to happen was a lot of the genetic counseling had always been done by the physicians or sometimes they receive premarital counseling, which is not exactly genetic, from religious leaders. Now, based on what a religious leader knows is what he's going to counsel the to-be couple on, right? However, in recent times, I have encountered individuals that want to get married, but want to understand what the risk chances are for their future children based on their genotypes.

And one of them happened recently where I had a to-be couple with the genotype STNAC. And they really wanted to understand what this would mean for their future children. Now, it was quite interesting and inspiring to a large extent that you have young people in their 20s that want to be, for the lack of a better word, genetically responsible. And so they are exploring all their options. They are gathering as much information as they can to enable them to make an informed decision.

And, yes, and that tells us that as the profession grows, hopefully we would have a lot more people wanting to have premarital genetic counseling to enable them to make informed decisions. Because the goal of this at the end of the day is to ensure that people are making decisions that are really informed. Yes. Yeah. You know, I kind of think about the goal of the government or, you know, what is the purpose of government in our lives?

And I would like to think that it is to raise the well-being of people in the country. And when I think of genetic counselling in Australia, in the Australian context, I think that yes, it probably, from a public health point of view, it does actually make sense economically. If we decrease the burden of disease in our community, then it would save taxpaying dollars and people can work and they can pay more tax and that sort of thing.

But the example that you give, it's sort of more immediate. Like if the government is kind of saying to the World Bank, if we introduce genetic counselling straight away, we should be able to see like an economic benefit straight away. And yeah, that is so fascinating. Yeah. I guess with sickle cell disease, when you're meeting couples.

What, like in Ghana, if you identify couples, what sort of happens, like couples that are both carriers and are at risk of having an affected child, what sort of happens there? Like, I'm guessing as a genetic counselor, you don't say that you're an unsuitable couple, but I'm assuming that, or I'm guessing that maybe the religious leaders would say that. How does that sort of work?

So when the religious leaders, and true, the religious leaders do say that, and that, oh no, this is not going to work. And I also believe that the religious leaders say what they say based on their understanding also of what it means to be a carrier of the traits. And so when we meet them as genetic counselors, so when I meet them as genetic counselor, I try to let them understand exactly what their chances are.

Then based on what the chances are, they then decide that, okay, they think this is high for them or they think this is okay for them to still proceed to want to be together. But I feel for me the most important thing is that they are making this decision based on the information it is sufficient enough to help them make an informed decision. Because what happens sometimes with the counseling they receive from the religious leaders, they are being told what to do.

And which I think to some extent also does not make them feel like they are being autonomous. And so it's important that in genetic counseling or in sickle cell genetic counseling, When I meet them, I try to ensure that they feel as though that they are capable to make their own decisions based on receiving sufficient information.

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I'm just wondering about the perception of religion. For example, in Australia, my name, Matthew, it's quite a Christian name. I was baptized Catholic and I grew up sort of Catholic. But to a certain extent, religion isn't that big of a deal. Whereas for yourself, you have a very Islamic name. I'm guessing you're Muslim. So do people sort of make assumptions about you or about what you might say before they meet you?

I would say yes and no. And just for context, I went to, for my secondary education, I went to a Catholic school, which was a minor seminary. And so I really have an interesting understanding of religion because I went, And my family is Muslim, and then I go to a Catholic school. And so I was made to read the Bible, I've read the Koran, and so I have both

understanded to some extent. Wow. And so when I meet individuals that do not necessarily share my faith, the same faith with me, I'm still able to engage because of my Catholic background. And so I'm yet to meet people that have made like very serious assumptions based on the name.

But I think what I have seen is when I meet a couple of people that share my faith, I think they are more comfortable to share certain things with me than when I meet people that sometimes don't share the same faith as me. So, for example, in Islam, polygamy is allowed based on certain conditions, right? When I meet a couple, a woman rather, that maybe we find through ultrasound scans that the child has a particular abnormality. And then there's an option of determination.

If she's hesitant to take it, even based on the information we've provided, I'm still able to empathize with her because sometimes, if this man has multiple wives that have children, I'm able to empathize that she still wants to have this child regardless because it would also make her feel complete. Because if the man has two other women that already have given him children and she is not able to, and the option available to her is a termination because of the prognosis, right?

I would understand her hesitancy to take it. And I'm able to empathize with her because I know that because she comes from like a polygamous marriage, she also wants to feel like she belongs. Wow, yeah. Polygamy is not something I have to think too much about too often. Right. But here, you would have to be because of religion and a majority of the cultures around do permit men to have multiple wives.

Yeah, okay. And so in the prenatal setting, it helps in understanding why women will not make certain choices or would want to make certain choices. And so with that understanding, it helps me be able to empathize with them. And so they are also able to open up because in their minds, I am a man, I'm a Muslim man that in my religion is permissible to have multiple wives, right?

And so they would, I'm able to understand why they want to do what they want to do, And it makes the counseling more open and I think more or less restricted. People are not holding back. Whereas I have encountered that when someone doesn't necessarily share my faith, sometimes they assume I will not understand where they are coming from. And that can make the session a bit less, more open. As a genetic counselor, I do try to ensure that the session is as open as possible.

But just certain assumptions, just I can't control.

Yeah. One of the things I wanted to ask you about was your experience of stigma in the community with genetic disease. Yeah i'm just wondering if you have maybe like thoughts or opinions to sort of get the the conversation going there yeah with stigma i think it's a big it's a big challenge and i think it's a big challenge not just in ghana but i think globally people with genetic conditions face some form of stigma one way or the other.

In Ghana, my belief is that it's because of the lack of education on these genetic conditions. So there are still people or communities where they believe that one can get a genetic condition when they physically touch the person that's affected by the condition.

And so I think one of the things I am thinking about more and more every day is how can we make education of these conditions more accessible to people so they understand that these conditions are not conditions you can get by physical touch, right? These conditions do not necessarily mean that just because a person has, for instance, sickle cell, that's not mean they cannot work.

They would be able to do some form of work, maybe not just every type of work people without sickle cell would be able to do. And so more and more, I'm thinking of ways in which I can make the education of genetic conditions more accessible to the general public. And that is not easy too because we have. Alas, I checked more than 200 languages that are spoken in Ghana. Oh, wow. So you just, because you could communicate it in English, right?

But with the people you want to receive the information, understand what you're saying. And so as much as you're trying to make this accessible, there are things you need to factor in, like, the languages so that everybody has a chance to understand what you're saying. Yeah. Yeah. And I'm guessing sort of, you know, in your day-to-day work, you're employed to see patients directly and to sort of work directly with them.

But sort of just thinking about what you said about the importance of education and sort of talking about different conditions to reduce the stigma. It's sort of done on a bigger scale. Is sort of working in the community and doing different talks and giving informational lectures, is that also part of your role or is it just something that you feel should be part of your role?

I think it's something that should be part of my role, but currently it's not part of my role. And so one way I am using my time to see how best I will be able to educate people on genetic conditions is I volunteer currently for an organization called Rare Disease Initiative Ghana, which is aimed to awareness creation, advocacy, patient support for persons needing with rare diseases.

And what I do is I support the patient affairs and support services team in providing genetic education and services to persons and families being diagnosed or evaluated for genetic conditions. And I believe more and more as I do this, I would be able to get the information out there in one way or the other. Yeah, it's sort of analogous to the story of HIV AIDS. You know, it was sort of discovered, you know, 45 to 50 years ago now.

And you know at the start people were worried that they could become infected by touching or being near somebody and you know i think that there's still a stigma around hiv now but you know we have very good treatment for hiv and it's seen more of like a chronic illness and not, Do you think that there's sort of lessons that you can use from HIV with genetic disease? Absolutely. So I have always been of the opinion that what has really helped in HIV has been the media.

And so when I think of education for genetic conditions, I'm also thinking of what media campaigns can we run that would make this information as accessible to people and humanize the people that have these conditions. Because people can only relate when they think of the person with their condition as someone just like them. And so I've always thought that one way to do this, and I think there's a person on YouTube, now I can't exactly remember his name, but he has a YouTube channel called,

and I don't know if I'm allowed to mention it here. Sure. All right. There's a YouTube channel called Special Books for Special Kids. Ah, yes. Where he writes. Right. And I think of it that that is one way of humanizing people because you see them, you see that they are able to do everything that someone like you and I will be able to do. And the more these things are shown to the faces of people, the more they become normalized.

And so I think the media is something we can leverage on as genetic counselors to a very large extent help us in education and stigma reduction. Because I think in HIV, the media has really helped.

Because in my country, I remember the HIV ads I used to watch that were meant to promote safe sex and the intake of antiviral drugs. They would show people that had HIV, but these people were healthy looking people. And what that did as a young person growing up is that it helped shape my perception of what I thought people with HIV should look like.

Right? So I think more and more, if we have people with a sickle cell, right, come on platforms like yours and other platforms, share their stories and tell us exactly what you are doing with your lives, it helps people understand that Their lives are just not about sickle cell. They are people that are engineers, right? And so it helps shape the perception. And so for me, I think the media is one we could use to help in reducing stigma.

Yeah. Yeah. It's interesting you mentioned that YouTube channel. I can't remember his name either, but it is a beautiful YouTube channel where I think he's a teacher himself, a private teacher. Yeah. He meets with children with different genetic conditions and it's something that I show my genetic counselling students in my class, but I'll share the link so people can check that out. Yeah.

So I'm thinking, you know, when I first graduated from genetic counselling school and I got my first job and I was thinking of my first genetic counselling conference or big genetics conference, I thought that it was all about education. Like it was just an avenue for me to learn and upskill and sort of receive education and information. But it wasn't until I went that I realized, wow, these conferences are about a lot more.

Like it's really, it became really important for me to meet different genetic counselors in my country and to make connections and to network and sort of more of this. I mean, I am a social person, but the social side of things was really important as well.

Now, I know that you have just been to a big conference. Was this your first genetics conference? Yes. This was, yes, this was the first. And how did you find it?

Inspiring and it also gave me a sense of community because at this conference you meet people that share the same maybe aspirations as you and you realize that you might be like in different parts of the world or different parts of Africa, but you share similar challenges, similar, apart from challenges, like you have stories that bring you together. So I met genetic counselor from Kenya, right? That stigma is something they are dealing with in their country, right?

Because people react a certain way when they meet people with certain genetic disorders and all of that. You also realize that genetic counseling is a profession. They are also still trying to get integrated into their healthcare system. And then you see that you are not alone in this. People from different parts of the world are experiencing what I experience. And I think that is comforting to know.

And it also makes you understand that you can leverage on these people to see how best you can push and make this profession more established yes i i feel like um you know the world is a big place but the genetic genetics community is quite small and my experience has been that people are usually very happy to share resources and you know if they've created something that helped them they're happy to kind of share it so it can help others and you know that's it feels

good to be sort of part of a community where this sort of positivity can occur yes yes before this i have attended an autism conference which is organized annually in ghana by the guarantee trust bank but i think because autism is quite a complex condition where you have like environmental and genetic factors you don't talk a lot of genetics when you go to this conference and so it's sometimes not about genetics when i go to these conferences but this

particular conference in uganda was all about genetics and so that's why i said that was very it gave me a really deep sense of community Thank you. Yeah, that's beautiful. And I think that, you know, it sounds like it sort of, you know, encouraged you or sort of helped you and then you can bring that sort of positivity back to your, to your, you know, local community, your job, and it can help you move forward. True. Yeah. Yeah, it did. It did. I did.

Now, one of the things that you sort of mentioned before we started talking was your little bit of qualitative research. I know when I sort of was studying qualitative research at a university level, one of the things that they spoke about was the importance of returning the results back to the participants.

And I kind of think, you know, it is important in research not to just do research for research's sake and that, you know, there is this sort of understanding that you will publish because then you're putting the information back into the scientific community. But my sort of personal experience has been that, or what I have observed, is that people or researchers, maybe in the Western world, when they do qualitative research, I'm not sure how much actually goes back into the community.

In your experience you know it sounds like to reduce the stigma and you know educating the local people of Ghana it's really important to sort of get that trust is giving that information back to the community something that's been really important in your experience?

Yes and for instance when I did my research for my final year of research, when I was almost done with the genetic counseling program, one of the things I wanted to look at was how single young adults in the northern region of Ghana. Understood sickle cell and genetic counseling. Now, it was important for me to understand what single young adults, what their perceptions were because they,

to take reproductive decisions. And so when I met this group of people, had interviews with them, the results showed that they understood what sickle cell was, to some extent understood what genetic counseling was. However, these single young adults did not know their own sickling status. And so what I did was consistently reach out to the participants that they didn't know to ensure that they get to test for their genotypes, to know their genotypes.

When the research was accepted for a poster presentation for the African Society of Human Genetics Conference. I did reach out to a few of them to inform them that, hey, thanks for your participation.

We are presenting this over here to let people understand that this is the current situation in Ghana this is what adults are saying and all of that and the reception I got from participants I was able to reach was that they were very grateful because it seems to a lot of them that when the research is done they really don't know what happens through the research because of course sometimes people actually look for these journals or like go into these what the research has said and

so for me my philosophy has always been to communicate my research findings back to the people that participated in the research because it makes them also feel like they are contributing to something greater that might, in one way or the other, maybe not directly change their lives, but change their lives of others. Because sometimes this research would influence policy, it would influence interventions.

And so, yes, communicating my findings to my participants has always been, from communicating the findings of my research to people that participated in the research has always been paramount to me. I try my best, yes. I try my best to ensure that they know what has happened to what they participated to do.

Beautiful. Well, I think on that note, that might be a good place to end the conversation. But, Ahmed, I've really enjoyed speaking with you this morning and learning a little bit more about Ghana and the challenges and the inspiring stories that you have from your country.

Right i have also enjoyed talking to you because your your podcast is one of the podcasts i started listening to when i wanted to expand my knowledge on genetic counseling so apart from this podcast which i realized it had been a while you had brought new episodes but i had listened to like previous episodes and there's another podcast in addition to yours i used to listen to.

DNA Today and there was another one called Genetically Speaking so these were, the three podcasts I used to listen to when I was still trying to understand what career path would be like in genetic counseling what genetic counselors or geneticists in other parts of the world are doing and all of that and so yes I just want to say thank you because this has also helped me sort of navigate the uncertainties. Your podcast and these other two podcasts, yeah.

Well, that is beautiful feedback. When I'm recording the podcast, I don't think I ever thought about people in Africa listening, but I'm very glad that this has been helpful. And yeah, I look forward to us hopefully meeting in person one day. Certainly and maybe we're recording someday when I have advanced a lot more in my career sounds beautiful I'll invite you back right thank you so much thank you.