DNA sequencing kits are everywhere. From learning about your ancestry, to finding your risk of suffering from future diseases such as cancer, these tools have become very popular and widely used. However, has this boom in testing put other people’s DNA data at risk, and who will actually own this information?
Sending your saliva off to a family history site or for medical research (such as those for donation schemes like bone marrow) seems a simple task, and it’s incredible to think this small sample can provide so much information. DNA is in all our cells (apart from red blood cells) and our saliva contains DNA from white blood cells and buccal epithelial cells (i.e. the top layer of cells in your cheek). Our saliva also contains bacterial DNA (~11%) and must be accounted for when sequencing DNA from a cheek swab. This method of DNA capture is cheaper and (in some instances, dependent on the company) considered as effective as a blood sample for DNA analysis.
What is the human genome? “A genome is an organism’s complete set of DNA…[containing] the genetic instructions needed to develop and direct the activities of every organism.” The human genome contains ~3 billion base pairs (A, C, T and G) which are crammed into just 23 chromosomes, all within every cell with a nucleus. It’s hard to imagine. Sequencing requires identifying the exact order in which the base pairs appear in every gene of our body: a mammoth task. The project began in 1990 and it is now thought that only 1% of the human genome has not been sequenced due to gaps in the current technology. The Human Genome Project sequenced 90% of the human genome and made the information public immediately.
Private companies worked on the other sequenced 9% and have filed at least 4,300 patents for the human genes encoded. On the 13th June 2013, the Supreme Court in the US ruled that human genes could not be patented (i.e. owned by a company) as genes were the making of nature, ruling all of the patents void. Edited genes (e.g. using CRISPR technology) however hold potential to be patented and owned for commercial use.
So companies can’t own our DNA, but what about the facts our genes can tell them about us? Despite us all sharing 99.9% of the same DNA, we are all unique and DNA helps to tell us where we’re from amongst other information such as if we have certain genetic markers for specific diseases. Our DNA can be found in nail clippings, fingerprints, blood, sperm, chewing gum, the list is endless. Some people’s DNA is stored in a police database when you provide your fingerprints, and can be used to check against, if you are accused of a crime in the future. Others send off samples for medical use (i.e. bone marrow donation). What about our privacy, property and fair use?
With more and more people sequencing their DNA for family history (for example), we have inadvertently sequenced more people’s DNA than have given permission. If your mum and dad both had their DNA sequenced, you have therefore had your DNA sequenced even if you didn’t send off a sample, as you take half your DNA from each parent. Therefore, many people’s DNA sequence can be worked out or suggested purely based on the members of their family who have had their DNA sequenced. What if you didn’t give permission? Should this be a future question?
On the positive side, storing DNA samples can be brilliant for research. Such data sets can help to deduce the cause of disease in a population and also work out which genes cause diseases/conditions. But what if your DNA helped with a breakthrough, would you get a cut of the profits? In 1951, Henrietta Lacks had cancerous cells (code name: HeLa cells) sampled from her which went on to create a new stem cell line with a huge commercial benefit and large clinical significance. However, Henrietta and her family were unaware that her cells were used and received none of the benefits. This was obviously a breach of legal and ethical codes and since then, measures have been put in place to ensure such things do not happen again.
Overall, it seems clear that no one can own our DNA, but there is still a very large grey area about what people can do with the information it provides. It has previously been suggested that insurance companies may want to use this data to determine how much to charge for various insurance policies. For example, if you have a genetic marker for cancer, your premium could increase. In a World where we all have given away certain bits of data without really considering the future, should we happily give away something that is fundamental to our everyday lives?