One of our Year 10 students has written an entry for the Immerse Education Essay Competition in the hope of winning a 100% scholarship to attend a summer course at Cambridge University in the UK. The competition is challenging: participants must choose one question from a list of eighteen controversial topics and have only 500 words to defend their answer. Essays must include footnotes and a bibliography. We are keeping our fingers crossed for our student and are very proud that he took the initiative to participate in this competition – very well done indeed!
Do you own your own genetic information?
DNA (Deoxyribonucleic acid) is found in human cells and contains the genetic information that directs the body’s growth, maintenance, and reproduction. Each individual’s strands of DNA are unique, which can tell one of his ancestry, or of what diseases one is susceptible to. No human can choose the genes they are born with, a fact that makes them essentially a product of nature and its intrinsic processes. One does not choose their DNA so thus one does not own it.
Secreted around your bathroom or kitchen, and delicately cladding the surface of your hair brush, are manifolds of your somatic cells. But what if someone came into your house, took them, and used it for research? Back in the mid-1950s, a patient’s tumor cells were biopsied, kept, and cultured. However, the patient never consented to the prolonged use of her cells. The subsequent research and intellectual property derived from the cells is not that of the patient’s. Once the DNA has exited the patient’s body, that DNA is no longer a product of nature, but a product of man; thus it no longer belongs to the person who inherits these.
In extreme cases, one’s DNA can be shared without the consent of the person.Testing companies share data only with explicit consent and under conditions of anonymity. And even this requires jejune legal processes. One’s genetic data, however, can, in extreme cases, be shared to law enforcement when solving murder cases – a company was ordained by law enforcement to solve a decades-old case. Since that case was cracked, a total of 25 cases over half-a-year have been solved using public genealogy databases. Whether this is ethically right or not is another question. Whatever the argument, obtaining one’s data without their explicit consent is a very direct violation of ethics.
A person owns their own genetic data so long as this is in their body. Once it exits, it is no longer a matter of is it owned – but who owns it. In 1995, Oregon introduced a law that stated that someone’s genetic information would no longer be considered private property once it is separated from that person’s identity. At the same time, before using genetic information, companies must ensure that individuals have offered blanket consent. Any researchers who illegally obtain or disclose genetic information, under the new law, could face up to $250,000 in fines. Once the DNA exits one’s body, it can no longer be considered private property, whatsoever.
Genetic material is something we inherit and share with our family members and relatives. But should we also share ownership of the results of DNA analysis, or should this knowledge be considered private? Dr Anneke Lucassen – a clinical geneticist from the University of Southampton – believes that if anyone is to own genetic information, it has to be all those who have inherited it and, more cardinally, it must be available to all those who might be at risk. The question, she says, is how to balance a right to privacy with disclosing risks to others.
What is the line between right and wrong? Between privacy and disclosure? When is one’s DNA truly their own? It is a pondering question – a question which will not be answered without further ethical and assiduous research in the future.
Guy B. – Grade 10 Student