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DNA testing, analysing of human tissue & the UK & New Zealand human tissue acts

DNA testing is the most scientific means of establishing whether people are biologically related. Various DNA tests and genetic analyses are readily available, giving us unprecedented insights into our own health or our genetic relationship to other people.

 
 

Any such test does however require 1 basic, important thing – a sample from which DNA can be extracted. People collect samples from themselves or from others in order to find the answers they need.

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Whilst in many countries the collection and analysis of genetic information goes pretty much unregulated, the situation in the UK is different. The UK is in fact the only country where there are laws in place (namely, the Human Tissue Act) which makes non-consensual testing illegal. This severely limits how people collect and use human tissue samples belonging to other people.

Reasons for DNA testing

The most widely carried out test on a global scale is the paternity test. There are countless laboratories and companies offering these tests including homeDNAdirect New Zealand, easyDNA New Zealand, International Biosciences and many others. Despite paternity testing being the most widely carried out test, people in fact carry out various types of other tests including sibling tests or prenatal tests; some individuals even transform their genetic profiles into works of art in what is known as “DNA Art”.

Tests exist to establish infidelity by using DNA and these are also readily available. Companies offering these tests clearly state they offer simple, scientific, laboratory findings based on the samples of laboratory analysis but then (perhaps rightly so) wash their hands of any consequences arising from the catastrophic revelations. With regards to relationship tests and paternity tests, people carry out such tests in order to determine whether they are truly biologically related. Whichever the case, often people carry out a DNA test without the knowledge or consent of the other person who is directly involved in the test. They may carry out the test by collecting, discretely and surreptitiously, a sample from the other person and then sending this for laboratory analysis.

DNA Testing and samples

Any DNA test relies on the analysis of some type of sample of biological material; a sample of human tissue that can yield the DNA profile of the person from whom the sample was taken. People who want to do a test, without the other person knowing, will be on the lookout for viable sources of DNA.  A father might collect hair samples from the child or perhaps a used Kleenex. Children might collect cigarette ends from their father. A mother might collect semen samples, a toothbrush or nail clippings from her partner and her child or children in order to resolve her doubts. People all around the world are taking samples of other people’s DNA and using this for DNA testing – alas, without the other person knowing.

Each one of us unwittingly leaves countless genetic records lying around and there may be, prying eyes and wanting hands eager to grasp that sample and send off for “secret” or “discrete” testing. The concept of DNA theft and DNA thieves has arisen. A DNA thief is a person who operates just like a thief, with similar motives, readily waiting to pick up something belonging to somebody else. The results can provide very personal familiar or even medical information of the person to which the sample belongs.

The Human Tissue Act and testing human Tissue in the UK

DNA testing companies seek consent of all parties being tested by having each declare consent in writing. A basic form which needs to be filled in, supposedly, by all people submitting a DNA sample – But such forms make it easy to eschew “DNA theft” or any type of illegal doing as there is a huge loophole in the laws across the world – no regulatory law. People can sign on behalf of other test participants and assume responsibility for testing samples belonging to someone else.

The UK is the only country where a law is in place that controls and limits DNA tests and the collection of any type of human tissue. The UK Human Tissue Act has indeed proved an insurmountable hurdle for direct to consumer DNA testing companies operating in the UK as the consequences of infringing such a law could be very, very serious – breaking the law results in “DNA theft”. The Human Tissue Act was implemented in 2004. Anybody carrying out a DNA test in the UK should be fully aware of the law and laboratories and testing company have a responsibility to inform their clients as failure to do so could result in lawsuits. Although the law is severely enforced and carries harsh penalties, some direct-to-consumer companies still operate unethically, selling DNA testing without making their clients aware that such laws exist. The consequences in such cases could fall on both the company and the person carrying out the test.

The Human Tissue Act makes it illegal to collect any type of DNA sample or genetic material with the intent of sending this for analysis in a laboratory. The scope of the analysis is irrelevant and the person who collects the sample would still be breaking the law, irrespective of whether they are sending this sample to determine infidelity, familial relationships or genetic health. In order for a DNA test to be carried out, the person to whom the tissue sample belongs (the hair, the finger nail, the mucus in a tissue and any other type of sample) must give their consent for the test. Absence of consent is a legal offence.  There is also one further important clause within the law which further limits DNA theft – not only must consent be provided by the person submitting the sample but that person must give their consent fully understanding the scope of the test and in what way their sample will be used. If a tissue sample has been collected from person X with the aim of using that sample in a paternity DNA test, person X must:

  1. Be made aware of the fact their sample has been collected
  2. Authorise and give clear consent for the test to take place
  3. Must understand the exact nature of the test and how the sample will be used

The Human Tissue Act does of course have exemptions. For example, criminal investigations do not require any type of consent for samples collect and analysed by forensic teams. Further to this, any tissue sample collected from a person who has been dead for more than 100 years is also exempt. For a person deceased within a period of less than 100 years, a direct, legally recognised, blood relative has to give their consent for the analysis.

New Zealand also has its own Human Tissue Act although this does not control direct to consumer DNA testing.  The law was actually introduced to increase and facilitate organ donation and transplantation rather than to limit the use of non-consensual testing as is the case with the UK Human Tissue Act. The New Zealand Human Tissue Act in fact outlines how consent can be given and by whom in cases of death, taking into consideration the wishes and intent of the individual. Consent can be given by the person themselves or these may authorise somebody else to make decisions on their behalf in the eventuality of their death.  The law primarily focuses on how tissue is stored and collected post mortem.

In Germany, the Bundestag (Parliament) in 2009 passed a similar law, which although not as restrictive as the UK Human Tissue Act, still limits the way genetic information is collected and analysed and the purpose of the analysis. In the USA, a small number of states, 5 in total, view DNA theft as a criminal act. However, as a global concern arises and a fear of stolen DNA identities becomes a reality, it is likely that many countries will revise their laws so as to protect their citizens from DNA theft.

 
 

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