Mainstreaming discussions on genes and genetic diseases

Making and running a mobile science exhibition is resource-intensive. But, we hope that every person who has come across the exhibition is inspired to educate and inform others on how to prevent genetic diseases, says Somdatta Karak
View of the mobile science exhibition: Gene-Health Connect
View of the mobile science exhibition: Gene-Health Connect
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Last year, at the Open Day of the CSIR-Centre for Cellular and Molecular Biology (CCMB), a biology research institute in Hyderabad, we administered a questionnaire to 78 students of Classes VIII-XII. We gave them genetic statuses of two parents and asked them to predict chances of their child getting sickle cell anaemia, a genetic disease.

As many as 60 of these students got it wrong whereas they could answer questions on infectious diseases much better. 

While both genes and infection-causing microbes are invisible to the naked eye, understanding the functioning of genes is arguably more abstract. When combined with the complexities of technical jargons and quantitative analyses, it is then not as surprising to see that young people find it difficult to think about genetic diseases. 

This is not a problem limited to classroom exercises. As many as nine to ten crore Indians are estimated to have genetic diseases. Simply put, they have at least one gene whose composition has altered such that it causes them a disease, and can also pass to their biological children.

India has reported about 450 different genetic diseases but some like sickle cell anaemia is more prominent than others. Most diseases require both parents to have at least one disease-causing gene for their child to be at a risk of begetting it. 

Scientists at CCMB explain marriages in small communities in India have led to different genetic diseases becoming prevalent in different communities. That is because if people marry among relatives or within small communities, over time, people in those communities have similar genes.

As a result, the chances of both parents of a child having the disease-causing gene also increases. A higher number of people with diseases is a problem for society to address for communal health and financial well-being of people and the state.

Testing for the disease-causing changes in genes in prospective partners is one of the easiest ways to predict the risks of diseases in their future children. This is particularly useful for those diseases where compositions of single genes decide the outcomes. Sickle cell anaemia and thalassemia are examples of such diseases.

Though the tests are easy and cheap to conduct, the associated social stigma prevents people from getting tested.

There are examples of people calling off marriage alliances when the tests reveal that one of the potential partners carry a disease-causing gene. This happens even when disease in future children requires both partners to carry the same faulty gene. 

If not in prospective parents, then one can test for genetic diseases in fetuses or newborns too. These help parents to prepare for the health conditions of their children. In our experience at CCMB, people opt for these tests especially when their earlier children are diagnosed with genetic diseases.

Early detection can also aid in better treatment options in some cases such as spinal muscular atrophy.

And, there are complex diseases too, such as diabetes. Multiple genes are involved in a disease like diabetes, and we don’t understand all of them very well. For preventing such diseases, societies have to challenge their traditions of marrying within their families or small communities. 

So, India needs sensitive public health campaigns for young people and old. At CCMB, we designed the Gene-Health Connect, a mobile science exhibition with Visvesvaraya Industrial and Technological Museum, Bengaluru. The scientists at CCMB set the theme and the learning objectives of the exhibition and the museum brought in its expertise of conceptualising and building the exhibits and capacities of running a long-term exhibition. 

Set in a bus with 20 exhibits, in the last 1.5 years, it went around cities and villages of Telangana and Andhra Pradesh, both states where consanguineous marriages are prevalent. The exhibition has gone to high schools and colleges as well as reached out to residential communities and village panchayat offices.

A science communicator travels with the bus who trains student volunteers at the venue; these volunteers then help their peers go through the exhibition. 

Trained student volunteers explaining the exhibits to the visitors at a Telangana Social Welfare Residential Degree College
Trained student volunteers explaining the exhibits to the visitors at a Telangana Social Welfare Residential Degree College

The interactive exhibits explain how genes function, how the gene composition can sometimes cause genetic diseases, how timely genetic testing and avoiding marriages in close relatives and small communities can prevent spread of such diseases.

It also gives a glimpse at the different facilities and techniques available in India for testing and treatment. The exhibition bases itself on the examples of diseases in India.

The interactive activities, some mechanical and others electronic, make the abstract concepts of gene function and quantitative analyses of genetics more visual. 

Some find it interesting to understanding how the genetic makeup of the father’s sperm determine the sex of the child while some spend more time understanding how genes decide our traits or how a disease like sickle cell anaemia actually manifests in our bodies.

Young women thronged to understand how fetal testing techniques work. Some hosting schools and colleges also invited medical doctors and genetic counsellors to take ahead the conversation in their communities and local media to popularise it.

The exhibition has reached more than two lakh people so far. Teachers of host institutions welcomed the bus because it relates with the textbook content they have to teach as well as goes to details beyond the textbooks. Young women students found the theme of the exhibition related to their health and bodies.

Medical schools found the exhibition useful in educating the young doctors on the science of genetic diseases.

While we hope that it has served well as a supplementary educational resource for students and teachers, the larger wish is that it has been a conversation starter on making better informed health choices among the younger people and on creating the right ecosystem to enable those choices among the older ones.

Making and running a mobile science exhibition is resource-intensive. But, we hope that every person who has come across the exhibition is inspired to educate and inform others on how to prevent genetic diseases.

(Somdatta Karak is a biologist turned science communicator. She heads science communications at CCMB, and her work is to make science accessible to young people of India. She is also an ex-Teach for India 2014 fellow.)

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