Ethical and moral concerns in genetic testing

From the successful mapping of the human gene by the Human Genome Project in 2003, to the rapidly developing next-generation gene sequencing technology in recent days, society has been consistently gaining a deeper understanding of the relationship between genes and diseases. Genetic testing can be used in risk prediction, diagnosis, and treatment of diseases, such as understanding the risk of cancer in your life so that you can take preventive measures early, assisting in the correct diagnosis of rare diseases, personalizing the types and doses of drugs to reduce side effects and increase effectiveness, and treating cancers with targeted therapy and immunotherapy. However, despite its wide range of medical applications, the increasing advancement of genetic technology also brought with it a series of ethical concerns, such as moral disputes about genetic discrimination, the implications of genetic testing and its results, and the right to privacy.

Ethical and moral concerns in genetic testing

Genetic discrimination – do genetic testing results affect future insurance / employment?

Hollywood actress Angelina Jolie once learned through BRCA genetic testing that her lifetime risk of developing breast cancer is as high as 87%, the publicization of which has aroused public attention to risk prediction genetic testing. But not everyone is willing to disclose their risk of illness like Angelina Jolie, and beyond this, there is the concern that genetic test results showing a risk of illness may lead to genetic discrimination if such information becomes disclosed.

There is the fear that if an insurance company is informed of the prospective insured’s future risk of illness, it may lead to the insurance company refusing to provide services to the prospective insured – or increase the amount of insurance – which is a form of discrimination. In the same vein, if an employer views an applicant's or employee's disease risk as a deterrent for hiring or promotion, it is also a form of genetic discrimination.

Notably, within Hong Kong, there are systemic guarantees to prevent differential treatment due to genetic information. Individuals are not obligated to provide their DNA results to their insurance providers / employers, and insurance providers / employers should not ask for your DNA results or require a genetic test unless necessary for workplace safety. Genetic information should also not be used to discriminate against, limit, segregate, or classify individuals in a way that would deprive them of opportunities. Nevertheless, genetic testing companies should also consider corporate ethics and make sure to protect the genetic data of genetic testing users.

Right to know about genetic testing

As genes are related to family inheritance, the significance of genetic testing is not only in the prediction or diagnosis of an individual's disease, but also in current familial implications as well as future family planning. Take, for example, a woman diagnosed with breast cancer caused by hereditary genetic mutations. Is she obligated to inform her siblings of this genetic information such that they can be tested early and implement preventive measures? If the situation is not a disease that can be treated like breast cancer, but a genetic disease that is incurable, such as Huntington's disease, would the situation be different? These considerations also apply for future family planning involving prospective parents with hereditary disease(s), where early preventative measures can be taken if the increased risk of a certain disease is acknowledged.

Whether it is for the tester or their family, genetic testing holds different implications. Subsequently, genetic testing companies should explain to their clients the significance of genetic testing, as well as the purpose of the genetic test(s). For example, some genes are related to diseases but do not necessarily cause disease, while other genes could cause disease, but there may not be effective treatments on the market. Ensure that testers have the right to know and an awareness of their potential options beyond their test results, such that they have enough information to make informed personal decisions and family plans.

Privacy of genetic testing

The genetic difference between people is only 1%, while the genetic difference between family members is even smaller. Consequently, these nuances in genetic information not only reveal personal characteristics, but even familial information. Improper handling of genetic information can therefore lead to privacy issues.

On the level of scientific research, gene databases have the function and significance of understanding gene function and disease association. If such genetic information is used in other places unknowingly, it will pose a threat to personal privacy.

It is thus crucial for genetic-related companies to strictly handle and protect the privacy of genetic testing customers. To learn more about how Codex Genetics protects personal data and genetic information, please refer to: Protecting the Privacy of Genetic Information.

Corporate ethics of companies related to genetic and biological information

In addition to providing testing services with reliable medical references, genetic companies must also comply with proper corporate ethics. Genetic testing companies need to handle genetic information with care and protect clients’ privacy. Furthermore, it is also necessary to correctly interpret genetic information and test results to ensure that clients and medical professionals can make corresponding response plans.