The Ethical and Legal issues of Genomic and Biometric Advances in Healthcare

Biometrics and genetic testing are commonly used technologies in US healthcare. As the collection of this highly personal information becomes ever more prolific, increased scrutiny is placed on how the data is gathered, stored and used. Ultimately, members of the public rely on laws passed by the government and, when necessary, legal assistance to ensure that their rights are recognized.

Ensuring that technology works for our benefit

Legal challenges, or the threat of them, can have a significant impact on how healthcare companies choose to manage their data and the ethical guidelines they abide by. For graduates who want to pursue a career in law and safeguard the rights of citizens, the online Juris Doctorate from Cleveland State University is an accessible pathway. Using advanced teaching practices, the course encourages students to engage fully with the concepts of law and then practice in a way that supports individuals in need and their communities.

What is biometrics?

Biometrics focuses on behaviors and characteristics that are specific to an individual. Our fingerprints, the pattern in the iris of our eye, our face and our DNA code are unlikely to be the same in any other person. Using biometric techniques, it is possible to identify a person from one or more of these features. The technology is used in several ways, and although these have proved very useful, there are legal and ethical implications.

Frequently, laws that address privacy and data management can be used as a guide when it comes to identifying the legal challenges of collecting biometric data. These include US federal laws, such as the 1996 Health Insurance Portability and Accountability Act, which governs how data is used in healthcare settings. This act essentially prevents healthcare organizations from sharing a patient’s data without their consent.

However, advances in biometrics are creating new problems that touch on both legal and ethical concerns. Hospitals are beginning to use iris scanning, along with facial recognition technology,as a form of patient ID. By providing clinicians with a potentially fail safe method of identifying patients, hospitals can avoid the costly problem of healthcare fraud.

Ethical concerns around the use of biometric identification techniques

Despite its benefits, facial recognition technology was called into question by a 2018 study that showed that biometric data used to create facial recognition software was failing when it came to recognizing certain groups of people. As its reference imagery was made up of predominantly male, white people, it was often inaccurate when trying to identify women who had darker skin.

As a result, the National Institute of Standards and Technology carried out a far-reaching study that examined the algorithms used by biometric technology. It also found them to be lacking when it came to recognizing people of color. Subsequently, the Biometrics Institute established a set of seven guiding principles designed to ensure that biometric data is used ethically and responsibly. These include training algorithms using diverse sets of data, transparency around collecting data and aligning technology with human rights.

How does genetic testing represent ethical and legal dilemmas?

All of our cells contain our genome, which is a complete set of our genetic code that includes our DNA and every gene in our body. Some of these are found in every human, but sections of our genome are variants that make us unique. These can be used to find out more about the diseases that a person might be vulnerable to and other traits that are specific to them.

Screening for genetic issues can be carried out on just one person or large sections of the population. In these larger groups, tests can be useful even when there is no present evidence of a condition.They constitute a service to public health because they are designed to be an early warning system.As some people could find out that they are predisposed to contracting a certain condition, ethical and legal issues are raised. The government has responded by passing the 2008 Genetic Information Nondiscrimination Act. This protects all US citizens from being discriminated against in health insurance or employment based on their genetic data. However, it does not cover every aspect of genetic screening.

Medical negligence and genetic testing

Patients can choose to have a genetic test, depending on their level of risk, but only if the test is offered in the first place. Physicians who fail to identify that a person is at risk of a condition – because of their family history or age, for example – may leave themselves open to a claim of negligence if the patient suffers as a result. Similarly, there could be legal ramifications for medical professionals who fail to give their patients the results of a genetic test, especially when they reveal a matter of concern. This failure has an impact not only on the patient but also on their family and children who may have inherited the same condition.

An ethical dilemma for medical professionals

In terms of ethics, genetic screening presents several challenges for medical professionals. Primarily, patients who are told that they have a genetic risk of disease should be offered counseling to help them deal with the consequences – though this is not yet a legal requirement. They may feel compelled to disclose this information to family members who could also be at risk, and there may be implications for their plans, such as choosing to have children. Furthermore, although the primary concern of a doctor is their patient, clinicians face an ethical minefield when it comes to confidentiality. The results of a genetic test are private, but some doctors may feel that it is in the interests of the family to disclose these results.

Laws will eventually catch up

In biometrics and genomics, the technology has moved at a faster rate than the laws that are designed to regulate it. However, over time,new and precise legislation is likely to inform how this highly personal data is managed and used. This ensures that these advances continue to work for the benefit of the individuals involved and society as a whole.