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Biobanking and Me: The Book That Brings Genomics To The People

Author: Nicklaus Kruger

Science requires trust and meaningful engagement. That’s especially true for human sample biobanking, where donors need to make informed decisions. SANBI’s Biobanking and Me speaking book helps them do just that - in isi-Xhosa, English and Afrikaans.

(Published - 20 Decenber 2019)

Biosciences and health sciences are advancing quickly, with new technologies and techniques invented every day. But how do we help ordinary people - and especially children - understand topics such as DNA, biobanks and diseases?

Biobanking and Me, a new speaking book recently published by Professor Christoffels and his team from the South African National Bioinformatics Institute (SANBI), communicate these concepts to children and adults alike through informative text, colourful illustrations and bilingual audio (English-Xhosa and English-Afrikaans versions of the book are available).

“The value of creating and increasing public understanding of science through meaningful engagement platforms cannot be overestimated,” says SANBI’s Professor Alan Christoffels. “Failure to do so can cause irreparable damage to meaningful community engagement as we have seen in other parts of the world”.

Biobanks collect and store a variety of (mostly human) samples from tissue, cells, blood, saliva, plasma or DNA. These samples are essential in biomedical research to understand disease mechanisms and develop new therapies, and also provide the vital infrastructure for research to support scientific advancement and innovation.

But it’s in the developing world that biobanks could be especially powerful tools. And the rapidly-evolving African biobanks are invaluable for biomedical research because the African population has the greatest genomic diversity on the planet, and represents an incredible resource of information for advancing a fundamental understanding of health and disease.

“Africa is the ancestral home of all of humanity, the Cradle of humankind - and genetic material of African origin is key to understanding disease mechanisms which aid in the development of more effective vaccines or treatments ,” says Dr Dominique Anderson, one of the project’s co-authors. “Having access to the rich genetic diversity across Africa would allow the continent’s researchers to understand disease, and develop better diagnostics and treatments, medicines and vaccines which are geared towards the continent’s population.”

It may seem like a no-brainer to establish biobanks everywhere, given all the benefits they offer - but there are some barriers to this happening in the developing world. The cost of the infrastructure required to store and share biological samples is one example. Additional challenges are associated with ethical, legal and social implications of scientific research such as benefit sharing and potential commercialisation.

But perhaps the main issue is the importance of obtaining truly informed consent - and how a lack of understanding by the public may complicate that.

“Members of communities who are donors of biological samples are essential stakeholders in health research, and meaningful engagement which increases knowledge allows these donors to make informed decisions,” Christoffels says.

“Access to high quality biological samples is the number one requirement to advance biomedical research. But we don’t get that kind of access without trust. And we don’t get that trust without actually engaging with the public.”

Biobanking and Me aims to do just that.

 

Simplifying Science - The Book That Literally Speaks To Kids

Meaningful engagement with donors of biological samples, intended for human sample biobanking, increases knowledge and allows donors to make informed decisions. Informed donors also provide a platform for public awareness, allowing communities to understand the impact of research, and may even encourage more people to donate biological samples.

“Biobanking and Me was written to explain concepts including biobanks, genetic research and participant rights, to persons from any educational level or background,” Prof Christoffels says. “The simplicity of the narrative, the illustrations, the bilingual text and soundtrack, makes the speaking book an effective tool to increase knowledge of biobanking and genetics in an easy to use and enjoyable way.”

That’s not just idle talk. The intervention was assessed among over 100 non-academic staff members at UWC, stratified according to language preference (English, isiXhosa and Afrikaans). Overall, knowledge gain was significant, and analysis of an opinion questionnaire revealed that the majority of participants had a positive reaction to the artwork, bilingual audio and text.

Improving a donor's understanding of biobanks and their human rights creates a platform for public awareness that could encourage others to donate a biological sample, thereby improving the quality and diversity of genetic research.

"Positive science outreach can build strong coalitions and perhaps even inspire members of the public to become champions in their communities,” Christoffels concludes.

Want to know more about Biobanking and Me? The speaking book has also been converted into a video format and can be viewed online in English, Afrikaans and Xhosa.​​​ And you can see just what difference it makes by downloading Understanding biobanking: An assessment of the public engagement speaking book intervention Biobanking and Me.​

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