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Since the sequencing of the human genome was completed in 2003, genetic testing has moved into the mainstream of society in medical diagnostics, forensic testing for criminal investigations and as a way for interested individuals to investigate their heritage and ancestry, giving some people knowledge about their blood lines and family for the very first time.
As with concerns we have addressed in past Forums related to data gained from social media being used and abused by organizations without our knowledge or consent and in ways we could have never predicted, genetic data is being harvested and used to create genetic models whose value and uses we could never have consented to in any informed manner.
If the use of created text is theft of intellectual property, isn't the use of genetic information a form of rape? Should genetic information be protected the way financial information, browsing information, or other forms of individual information are? Let’s explore genetic testing…
[1] describes different types of genetic testing:
- Newborn screening: Testing the newborn to detection and prevention of various set of diseases.
- Carrier testing: Helping couples to learn if they carry any gene that can be passed to their future children.
- Prenatal diagnostic testing: Testing a fetus's genes while s/he is in mother's womb.
- Treatment related genetic tests: to confirm a diagnosis in a symptomatic individual or to monitor prognosis of a disease or response to treatment.
- Predictive or predispositional genetic testing: can identify individuals at risk of getting a disease prior to the onset of symptoms.
- Forensic testing is used for identification. Some applications are criminal investigation, questions of paternity etc.
Beside these, some private companies started offering some commercial services to people for giving a better understanding of their heritage and for providing custom preventive lifestyle suggestions. Such tests sometimes include some ethnical background analysis also; a pop-culture example of which can be considered "You are 25% European, 74% Causcasian, 1% Japanese". A YouTube video comparing a number of such services is given in [2]; another example video from one of these companies is given here [3].
Some (ethical) considerations coming with such tests are as follows (Some points are mentioned here [4]:
- Privacy and Confidentiality: Where is the data stored? Who has and should have the right to access it?
- Equity: Defining someone's biological identity can potentially lead to certain forms of discrimination: For example, people with certain medical risks are not being employed or insured.
- Free will: Telling someone about their biological facts might be a limiting factor in mind, leading to determining/imposing on their free will.
[1] https://www.ncbi.nlm.nih.gov/books/NBK115571/
[2] https://www.youtube.com/watch?v=R4jZvfbEmZo
[3] https://www.youtube.com/watch?v=RV5euA2A8RI
[4] https://www.ncbi.nlm.nih.gov/books/NBK236044/
- Commercialisation of testing: if there is potentially useful information
in genetic testing regarding managing diseases, should the test be part of
public health care? could that give governments more control over
populations?
- Inconsistency of results: there are examples of noticeable differences in
test results from identical twins, given that, are the ancestry tests
oversold?[5]
- Ethics around training data provenance: in order to identify genetic
markers of different populations, genes from individuals drawn from those
different populations must have been collected and analysed. Moving
forwards, should there be "genetic museums" to store genetic material that
have been analysed in the way archeological artifacts are stored? [6]. The
same data was used in [7].
[5] https://www.cbc.ca/news/science/dna-ancestry-kit...
[6] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC180...
[7] https://academic.oup.com/genetics/article/155/2/...