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How South Africans can use their DNA to be good genomic citizens

Is supporting local businesses – and getting your DNA analysed – worth it?
Direct-to-consumer genetic testing can help scientific researchers. Image: Andrey_Popov/Shutterstock

In the past few years, people have become fascinated with using their DNA to learn more about themselves, their origins, family trees, predisposition to health conditions and quirky traits. This has been enabled by the rise in popularity and the relative affordability of direct-to-consumer ancestry testing in places like the US. This testing allows people to swab their mouths to collect cells containing DNA, which are then sent off to companies for testing and analysis.

Today sites like AncestryDNA, 23andMe, MyHeritage and FTDNA dominate the European and US markets. But until recently, this service has been inaccessible to most South Africans. That’s because testing using overseas companies can be expensive, and there are logistical hurdles to shipping sample collection kits into and out of South Africa.

Recently, local companies like DNAnalysis and Be Happy To Be You have started to offer genetic testing, ranging from ancestry to nutrigenetics (what your genes say you should and should not eat) and health screenings.

Many potential clients are, however, sceptical about using these services. They view them as sub-standard and more expensive than some of the larger, overseas competitors. There are also concerns regarding privacy.

So, is supporting local businesses – and getting your DNA analysed – worth it? My opinion, as a human population geneticist who has researched the role that extensive genetic testing can play in mapping diseases, is “yes”. As more clients choose a local service provider for direct-to-consumer testing, the accuracy of the service will increase, the costs will decrease and the resulting data generation can be used to boost medical research efforts.

Addressing concerns

The process of completing a direct-to-consumer ancestry test is fairly simple. When you visit a site and request a test, you will be required to sign a consent form, fill in your personal information (contact details and address) and then wait for your test kit to be couriered to you. This kit is used to swab the inside of your mouth. The swabs are then sent back to the company for further processing, which involves extraction of your DNA and then computational analysis. An ancestry report is generated by comparing your genetic data to data of other worldwide populations.

But what of people’s concerns around accuracy, cost and privacy?

Firstly, there is no evidence that the services offered by local companies are sub-par. In fact, they should be more accurate because of the context in which the data is analysed. Local companies will have databases of South African data that other overseas companies do not. For example, instead of containing two different southern African populations (in line with overseas companies), local companies might have 10 and therefore be able to provide more detailed, granular reports.

Furthermore, scientists who work in local companies have acquired local knowledge and are therefore able to work with South Africa’s unique genetic diversity better than anyone else.

Secondly, testing in South Africa is for the most part not more expensive than overseas. If South Africans use an overseas company, they’ll generally have to pay for courier fees to get a sample collection kit delivered and sent back to the company as well as potentially paying import taxes. There’s also a risk that the sample collection kit might get held up or even lost in either direction of the courier process. This may add to the overall cost.

Typically the price for direct-to-consumer ancestry testing in the US is between $69 and $99. Adding approximately R800 (around $50) for courier charges brings the cost for an international test to between R1 900 and R2 400, compared to between R1 000 and R2 499 locally (courier fees included). And, as more and more people start using local resources, the products and services will become cheaper over time.

With regard to data privacy, confidentiality and anonymity, South Africa has some of the strictest laws that govern personal data, particularly the Protection of Personal Information Act. All local companies are required to adhere to this.

There is another aspect South Africans should consider when they’re thinking about using local services for genomic testing: the importance of creating a genomic citizenship movement.

Benefits for all

When you send your DNA to a direct-to-consumer genetic testing company, you are investing in a product and service that benefits others. By making your de-identified genetic data available for use in local companies’ databases and for research purposes, you directly contribute to scientific development by increasing the accuracy of these services for other clients and in some cases, for yourself and for your family members.

Scientific researchers can use that de-identified data to investigate, for instance, why some individuals get sick and others don’t. An example of this has been seen during the COVID-19 pandemic. Genetic data from direct-to-consumer genetic testing has been used to investigate how the disease progresses and why some patients are asymptomatic while others succumb to the disease. This was made possible by individuals who allowed researchers to use their genetic data for this purpose.

Over time, with an expansion of genetic data, it will be possible to diagnose patients with genetic diseases that would not have been diagnosed otherwise. Scientists will be able to answer questions regarding the efficacy of medications in some patients and speed up the development of gene therapies that could save countless lives.The rise of direct-to-consumer services is an opportunity for South Africans to contribute, in their own way, to a greater genomic future.The Conversation

Caitlin Uren, Postdoctoral research fellow, Stellenbosch University

This article is republished from The Conversation under a Creative Commons licence. Read the original article.

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Its a nonsensical idea to argue that its a good idea just for people to hand over their most private materials in the name of getting the equivalent of a packet of biscuits, a pat on the back and a glass of coca cola.

I personally don’t see any benefit for a person, unless for proving of paternity and or relation with another (where there is a doubt of relationship) to establish and or confirm that relationahip.

Soon, people will lbe arguing that it is a good idea for the government to take a facial imprint of you each time you go into public, and for banks to finger print you because ‘they need to prove you were born’ (as if your ID document does not prove your ID.

This is a slippery slope down which many civil liberties will be infringed upon, with the slimmest excuses such as ‘if you have nothing to hide, you have nothing to worry about.’ Oh, really? It turns out I do, I don’t want to live in an Orwellian Society where I am constantly under the surveillence of Big Brother whether by camera or by genetic tagging. What if the insurance companies deny you insurance or jack it up because they can tell from your genetic profile that you are predisposed to coranary or other expoensive to cover illness. What if the police just use that DNA given in confidentiality (with or without a warrant/subpoena to cross reference ‘criminal databases’ for the heck of it to figure out if you are not implicated?

This is a bad idea – just as it is a bad idea to be posting all the personal data on social media. Your business is your business and needs to remain your personal business. What if these companies monetize your genome, are you to benefit from it? Or are you going to be screwed as usual?

COMMENT HELD FOR MODERATION
29 NOVEMBER 2020 @ 5:58 PM
COMMENT HELD FOR MODERATION
29 NOVEMBER 2020 @ 5:55 PM
COMMENT HELD FOR MODERATION
29 NOVEMBER 2020 @ 5:48 PM
The bias toward the minority view is most certainly the preference of this website..

COMMENT HELD FOR MODERATION
29 NOVEMBER 2020 @ 7:55 AM
Moneyweb is evidently employing the new advanced style of censorship? Comments that are too difficult for the admin bot to categorize are simply held indefinitely?
COMMENT HELD FOR MODERATION
28 NOVEMBER 2020 @ 5:36 PM
Agree about the biggest issue being further pandemic reactions. Dems want lockdowns until vaccinations completed = success for economic suicide and vaccine merchants. But now there is a truth leak that must surely sprag the vaccine merchants and scuttle the prospective bargain business acquisition targets. A high level analysis of the US Covid-19 deaths reveals errors that reduce these numbers into non-existence. https://www.aier.org/article/new-study-highlights-serious-accounting-error-regarding-covid-deaths/
All hands on deck to fix the leak and PR it into river? You bet.
The acceptance of this analysis will have global repercussions.
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End of comments.

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