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Abu Dhabi, UAEMonday 10 December 2018

Genetic data can lead to huge scientific advances but the advantages need to be weighed up against relinquishing privacy

We must be vigilant that we don’t give wings to the worst of human behaviour disguised as progress

Prince Harry is one of the two per cent of the global population who risk prejudice from "gingerism", just one of the types of discrimination based on our genetic codes / AFP
Prince Harry is one of the two per cent of the global population who risk prejudice from "gingerism", just one of the types of discrimination based on our genetic codes / AFP

Prince Harry, one of the world’s most famous redheads, has been prominent in the world's media for his good news this week – but as a little aside to those headlines about his engagement to Meghan Markle, it is worth observing he is one of the two per cent of the global population with similar colouring who too often suffer from "gingerism", the mockery and discrimination faced by those with his hair colour. Prejudice is built on assumptions about being different, a so-called deviation from the supposed norm.

The online dating site Match.com got into trouble for referring to red hair and freckles as "imperfections". Campaigns have been run to change attitudes. One initiative has even ensured the introduction of a red-haired emoji.

All of this social activism to address historic and damaging beliefs about redheads might well be undermined. Recent genetic studies claim to show that people with red hair experience pain differently from everyone else. Or, to put it simply, they are different.

Each human being has a unique genetic code and there is something thrilling about the idea of identifying and decoding the inner mystery of what makes you who you are. But with the excitement of unlocking the keys to the human condition, we should be striking a note of caution and ensuring we put in place structures of moral accountability and governance to protect our most definitive and intimate datasets.

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The horrors carried out in the name of eugenics are not as far in the past as we’d like to think. While appalling Nazi experiments rightly are treated with abhorrence, the negativity towards race and disability persists.

Studies by bodies such as the Proceedings of the National Academy of Sciences in the US show that even today, black patients sometimes suffer from racial bias and are given less pain relief than white patients.

It’s undoubtedly true that unlocking genetic codes and getting glimpses of how our inherited gene pool might shape our lives is a powerful thing. In particular, when it comes to our health, it can help us take preemptive measures.

In 2013 Angelina Jolie underwent a double mastectomy after finding that she was a carrier of a faulty BRCA1 gene, which predisposes to breast cancer. She also had a family history of breast and ovarian cancer. Her public announcement of her genetic status and subsequent operation prompted an upturn in women being tested for the gene.

As with any large data source, genetic profiling is quickly turning into an opportunity for marketing and lifestyle. Along with health services, they can allegedly tell you what foods to eat to help you lose weight depending on your genes and even offer to help tailor training schedules to improve your football skills.

In doing so, however, we are handing over our most intimate data – our genetic information. This is despite the fact that we get edgy about records being kept of our fingerprints or our internet search histories being accessed by authorities. But like the handing over of our personal data via social media, we need to be aware that we are giving away our data.

Are we giving that information to businesses, governments and even other individuals who may or may not be scrupulous? Benefits such as finding family members, or taking precautions against health risks need to be weighed up against relinquishing privacy.

Of course, in the era of big data and social media, does privacy even matter anymore? Do we even care? However, while we might be willing to give up our own information, genetic identification is so intricate that, coupled with the data we publish about ourselves, we might well be giving away the privacy of others around us who have no say in the matter.

There are also huge practical implications. Healthcare companies will exclude conditions that clients have already suffered. They could enforce genetic testing and exclude anything that might even have a predisposition.

Our deeply held social and moral beliefs can come into conflict with science and data. We may well believe that health should be preserved for all and that our genetic inheritance should not exclude us from basic humanity. After all, what kind of society would we be if we cast people aside due to their genetic codes?

Genetics offers hugely exciting possibilities. But we must be vigilant that we don’t give wings to the worst of human behaviour disguised as progress.

Shelina Janmohamed is the author of Generation M: Young Muslims Changing the World