A BREACH OF PRIVACY? ETHICAL CONCERNS SURROUNDING THE THE COLLECTIONAND USE OF GENOMICS DATA

By Miracle Ifezue

In recent years, there has been a significant increase in the collection and use of genomics data for medical research and personalized healthcare. The availability of such data comes with various advantages like the advancement in biomedical science, informatics and bioethics. While these advancements have the potential to improve the diagnosis and treatment of genetic disorders, they have also raised concerns regarding privacy and ethical considerations, this situation has presented the general society and medical sector with the problem of a clash of interests. The breach of privacy in the collection and use of genomics data has become a topic of debate and reallife examples illustrate the potential consequences of mishandling such data.

One of the primary concerns surrounding the collection and use of genomics data is the risk of data breaches. In 2020, the UK’s National Health Service (NHS) experienced a data breach that exposed the personal and genetic data of thousands of patients. The data included patients’ names, dates of birth, and genetic test results, which could be used to identify individuals and their potential risk for certain diseases. In one instance a stranger visited a woman’s home and informed her of her details. In various other cases, the NHS has had to pay thousands of pounds in damages to victims of this breach. In a research carried out by the Information Commissioner’s Office (ICO), it was stated that 3557 personal data breaches were reported across the health sector and although this number is quite high there is a major probability that it is even higher due to the number of unreported cases. A combination of the various instances of data breaches sparked public concern about the security of personal data and the need for increased measures to protect such information.

Over the years the collection of genomics data has proven to be very advantageous, it has helped scientists and health professionals better understand diseases and how to best combat and prevent them it has also greatly contributed to the growth of precision medicine which is where the doctors analyze a patient’s DNA to better understand which drug would be the best and most efficient in combating the disease. Taking it outside health care the use of this data has helped solve crimes, this occurs when DNA gotten from the crime scene is matched to the general database to find a match or even to exonerate innocent suspects by matching their DNA to that at the crime scene. It is also imperative to note that in a study done by the Harvard Medical School Personal Genome Project (PGP), they arrived at the opinion that guaranteeing total privacy was impossible, they made it imperative to inform volunteers about the benefits and risks of the project, although they took cognoscente of the risks involved they were still in support of the collection due to the advantage and its impact on the general furtherance of research and the breakthroughs that can be achieved through it.

Several solutions have been purposed to mitigate this problem, the data being stored in federated models taking away an over-centralization of power, as a result of this, one individual or organization cannot possess all the data at once. Although these federated models present a solution to the risks presented by collecting this data, this solution introduces another problem which is the high probability of duplicating data. Although a solution for each piece of information be granted a serial number of some sort has been presented, only time can tell if it works. Efforts have been made by the Government to put policies and laws in place to govern the collection, distribution and use of this data. We can see an example of one of

these policies when we look at the Mayo Clinic’s Biobank Privacy Policy. Another ethical concern surrounding the use of genomics data is the potential for discrimination. Insurance companies or employers could use this information to discriminate against individuals based on their genetic risk factors. For instance, a company might refuse to hire an individual who has an increased risk of developing cancer in the future. Such discrimination can have serious adverse effects on individuals and society, leading to stigmatization and exclusion of certain groups.

Moreover, there is a concern that the use of genomics data could lead to the exploitation of vulnerable populations. Historically, there have been instances where medical research has been carried out on vulnerable populations without their consent. These groups may include people with disabilities, prisoners, or those living in poverty. Without proper consent and protections in place, these populations may be at risk of being exploited for their genetic data.

In conclusion, the collection and use of genomics data have raised serious concerns regarding privacy and ethical considerations. The risk of data breaches and potential consequences of mishandling such information. The benefits gotten from collecting this data have proven very crucial to the growth and development of research. It is crucial to have strict regulations in place to protect the privacy of individuals and ensure that their genetic data is not misused. Only with responsible handling can the promise of genomics data for personalized healthcare be realized.