The ethical and privacy implications of genetic testing

Ethics and privacy of genetic tests It's a controversial topic due to all the consequences it entails. Here we explain the main debates.

Ethics and privacy of genetic testing: controversies

In parallel with the progress of the discoveries in genetics , the question has always been raised limit of ethical and privacy issues. In the first case, it is the bioethics which attempts to provide answers and offer limits. On the other hand, when we talk about privacy we refer to the fundamental rights of the Spanish Constitution (article 18) of secrecy of communications.

Certain legal issues bind the professionals who perform the test, the laboratory, or the hospital. Therefore, they are non-negotiable, and healthcare professionals must be trained to ensure proper traceability of information. When it comes to working with genetic tests , this process is particularly delicate.

Taking these two pillars into account, we indicate the main controversies that exist today.

1. Who can review genetic tests?

Genetic tests can be reviewed by the doctors , with the aim of making a diagnosis of a situation. However, only instrumentally, because the ultimate recipient is the interested party, who is the one who requested the test. And, of course, except in the case of an express court order, medical confidentiality exists. Therefore, person has the right to the privacy of their data , in accordance with current legislation.

2. Objectives compatible with the ethics and privacy of genetic testing

The purpose of genetic testing is another hot topic that must be properly managed. For example, carefully assessing the benefits and drawbacks of any medical test. And, if required, using the results for the purpose of improve the patient's quality of life .

However, we must point out that, when the test is for recreational purposes, this element is blurred. First, because it is done at the request of the interested party. Second, because the data to be shared, in principle, does not necessarily have to be relevant to health.

3. What medical information should patients receive?

The Ethics and privacy of genetic tests requires that, previously, the patients receive information from their doctors . Not surprisingly, if these tests are for medical purposes, some aspects must be clearly defined.

For example, patients have the right, before the test, to know the scope and consequences of the same, both for themselves and for third parties. And they also have the right to receive this information in a way they can understand. Ultimately, a genetic test prioritizes patient empowerment.

As a protocol, all patients should receive this information, and any questions should be addressed. This way, they have the opportunity to decide whether or not to undergo testing.

4. Is it ethical to do a test to clone genes?

Genetic cloning is one of the Ethical debates that have been on the table since the 1990s. And, with its pros and cons, a window of opportunity has opened to consider it legitimate in some cases.

When would it be ethically Is cloning acceptable ? At the moment that it is useful, for example, for the Stem cells , because they could replace tissue and cure diseases. Here, there is beginning to be a certain consensus in favor of using these technologies in certain cases.

However, what is completely ruled out is doing a test with the aim of cloning the genes. for creating a replica of a human being . This practice is illegal and considered ethically unsustainable.

5. Is gene editing legal?

A therapeutic variable that is being applied today is the gene editing . What would it consist of? Basically, repair of defective genetic material in the cell. This technique is being performed on embryos, with the aim of reducing the likelihood of developing genetic diseases.

For example, here the genetic compatibility test or of reproductive immunology They are especially useful. In fact, they are used to identify the main problems that already exist, and an attempt is made to solve them. However, we must point out that these types of modification actions are only carried out in unexpected situations, especially in diseases such as cystic fibrosis .

As with cloning, we can say that, with many limitations and qualifications, performing a genetic test to determine the initial situation is legitimate. Therefore, it could also be performed.

What is the right to apply to the ethics and privacy of genetic testing?

The The ethics and privacy of genetic testing are regulated by various regulatory texts. As we have said before, in Spain The reference text for privacy is the Article 18 of the EC . However, there are other regulatory documents that should be known:

• Hippocratic Oath: The Hippocratic Oath is the ethical code that every medical professional must follow. When it comes to proposing a genetic test or handling information about the results, you must take it into account. And, we add, it is binding, because it follows the Geneva Declaration .
• Medical Code of Ethics : Likewise, the General Council of Official Medical Associations of Spain has a code of medical ethics. This is especially interesting because it focuses on those aspects that the Hippocratic Oath leaves most ambiguous. It makes it clear that genetic testing will only be done at the request of the patient and with his/her consent , maintaining privacy and, in addition, the doctor is only the custodian of the results and samples (article 58).
• Organic Law on Data Protection : Organic Law 3/2018 on Data Protection also applies to information management. It is legally binding and is just below the EC, as it does develop a fundamental right .

In principle, with all these references, work is being done in Spain to prevent misuse of the information.

In conclusion…

The Ethics and privacy of genetic testing can be easily guaranteed, as long as the patient is guaranteed the confidentiality of communications. In Genotics We include a database of laboratories where you can perform genetic tests at the best price. Contact us . and get better information!