This article has been written by Harshita Varshney from Aligarh Muslim University, Aligarh. This article aims to analyze the importance of genetic privacy. The developments and advancement in science and technology have made it easy to collect DNA samples of people and extract personal information from such samples. But these developments are constant threats to a person’s right to privacy.

Introduction

Genetics has emerged as a hope in the field of medicine. The genetic data is used in some of the most advanced medical research. It can be used to develop medicines for dangerous diseases like cancer. It can be obtained from our cells and can easily be shared with anyone. This brings the problem of a person’s privacy and security. There is a big question in this context: what can be done through the genetic data, both legally or illegally. 

The privacy of genetic data

The privacy of genetic data is a concept which aims to prevent a third party or someone else from using an individual’s genetic data without his consent. The developments and advancement in science and technology have made it easy to collect DNA samples of people and extract personal information from such samples. But these developments are against the person’s right to privacy.

In the future, modern genetic science holds an important position but it can also be misused and may give haunting results. The privacy of genetic data is important because the genes of a person are the blueprint of his/her physical or biological being. If someone has access to one’s gene sequence, he can learn the insights of his private life. Even he can know about his future. 

When an individual’s genetic data is used whether in research, in medical applications or any other field, it should be ensured that his privacy is maintained. 

How does consumer genetic tests operate?

Generally, genetic testing is done by healthcare suppliers such as physicians, nurses and genetic specialists. The healthcare suppliers notify which test is to be done. They ask the laboratory to do the test by collecting the DNA samples, studying the reports and interpreting these reports to the patients. But, the direct-to-consumer genetic test (DTC) is a different one. In this kind of test, there is no need to get in touch with any physicians, nurses or specialists. Many DTC companies advertise their genetic test online, through television or other modes.

In this kind of test, a consumer sends the DNA sample to the companies and receives their reports by an electronic mail or through the post. In this test, the genes or DNA of a person are studied to check if there is any risk of forming any dangerous disease or illness. This test can be done through a blood sample, a swab from a cheek or from the saliva. The samples for the test can be taken at home and then sent to the companies so that they can study these samples. There are many companies which offer direct-to-consumer genetic testing for various purposes like finding their origins and distant relatives. But generally, people take DTC for checking if they have any health issues. 

What do the companies do with the genetic data?

These testing kit companies hold the very personal data of their users, so effective measures should be taken by them to take care of the database carrying the genetic information. They should take the issues regarding the security of the genetic data of their consumers very seriously because there is always a threat of hack or breach of the data. 

The direct-to-consumer genetic test (DTC) companies share their customer data only on an opt-in basis and most of the consumers agree to this. These companies share data only after obtaining consent and under specified conditions only. When the information is shared after obtaining the consent, the companies always assure not to disclose the identity of their users. Different companies have different privacy policies. The users must go through them before accepting them so as to ensure their privacy.

Effectiveness of de-identification of genetic data

De-identification is an important measure through which a person’s privacy can be maintained. When a person participates in any human trial his data is de-identified as to protect his privacy. The process of de-identification is beneficial to health and research organizations as after the certain identities of a person like his name & phone number are removed, they can use the genetic information in research work. The genetic testing companies always de-identify the data. These companies remove the name from the data so that anonymity is maintained. But, this may not give 100% good results because each person’s genetic data is unique and it may get tracked back to them. And whenever the genetic data of an individual is used for any research purposes, they have to know about the person’s information which means exposure of an individual. So, it is not necessary that the process of de-identification will always maintain the privacy of an individual. 

There is also a concept of re-identification, opposite of de-identification, in which a person’s anonymity can be broken. The researchers apply unique algorithms in the genetic databases due to which the researchers can re-identify the specific individuals even from the data which were thought to be anonymized. This concept of re-identification is a major threat to a person’s genetic privacy.

Concepts of genetic privacy

The genetic information of an individual is different from other types of personal information. Therefore, special care should be paid to it so that no one can breach one’s privacy. As genetic science is developing, now the genetic tests can be conducted through the small tissues of the human body. In some cases, the test can be performed with a root of single hair or saliva left on a glass from which a person drank water. And obviously, these kinds of tests are done against the will of the person which is against his privacy. So, this should be ensured that a person’s privacy is secured.

Genetic Exceptionalism

The genetic information is much different from other types of personal and medical information, so it should be treated differently and with special care. The genetic information contains such elements in it which make it different from a person’s other personal information. Here are some features of genetic information which make it different from other personal information:

• The genetic data gives information about genes, which is a unique identifier, through this a person can be traced back; 
• It can get to know if he would have a disease in future;
• A person can know about his origin and distant family members through genetic information; 
• The genetic information gives the status of a person’s health, so it may make him more conscious about his health.

While the genetic information has a capacity to provide private and health benefits to an individual, it also creates a threat to an individual’s liberty by disclosure of this information like:

• The third-party like insurance companies and employers have more interest in this information. The insurance companies can check about the medical history of a person through his genetic information and on the basis of it they may deny the insurance or may charge high premium from the person; 
• This information gives unexpected information about health, family members which may hurt a person; 
• If someone has the unauthorised access to this information, then it will surely affect the privacy of an individual;
• This kind of information can be extracted from a root of single hair or saliva left on a glass from which a person drank water. And obviously, these kinds of tests are done against the will of the person which is against his/her privacy.

People have regarding the status of genetic information. Some of them are in the support of genetics exceptionalism. They hold the position that the genetic data of a person holds very sensitive information about him and his family, so the policies should be made for protecting the individual’s privacy. More emphasis on consent should be given while doing genetic tests. Genetic exceptionalism is needed to ensure the person’s privacy and for his equal treatment, if his genetic information gets disclosed. Therefore, genetic information is much different from other medical information. 

However, some other people are against the concept of Genetic exceptionalism. According to them, there is no difference between the genetic information and other medical information of a person. They hold that the results of a medical test will also show the same results in the genetic test. Both genetic and non-genetic tests can tell the status of a person’s future health and can give information about the family.

Genetic Databases

A database is an effective way to store and organise information electronically. The number of databases containing genetic information is growing day-by-day. The use of these kinds of databases requires only DNA. These databases are DNA banks, which store information derived from DNAs and other tissues of the body. The genetic databases are kept for medical research, public health and for clinical purposes. These databases are kept in both government and private sectors. They are also used for non-health purposes like for the reunion of a family or conviction of a criminal. 

It is really dangerous to store one’s personal data in a large database along with millions of other customers. While storing personal data in a large database makes data more vulnerable to get hacked. 

Ethical and legal obligations of the clinicians

The clinicians and health professionals have both legal and moral duty to maintain their patient’s privacy. But, this is not an absolute one. The clinicians can disclose the genetic information of their patients only in special circumstances like if there is a huge duty to prevent the life of others, or if such information wouldn’t be disclosed then it may harm other people. If the breach of genetic information is necessary, then the clinicians must try to obtain consent from their patients and if the patient is not ready to do so then he must be told why such disclosure is needed. 

Apart from this a clinician have the following duties:

• He should know about the medical history of the patient and his family;
• He should use the correct techniques while analyzing the DNA reports;
• He should collect the relevant data according to their patient history;
• He should make a disclosure to their patient’s relatives regarding the risk of any inheritance disease. 

Uses of genetic information

Genetic information means personal information which can be derived from the sample of genes of a natural person. With the advancement in technology, people believe that various information can be derived from a person’s genetic data. The genetic information can be beneficial to an individual and as well as for society in different ways. 

Enhancing individual’s health

The genetic tests can inform an individual about his current as well as his future health status. When the people will be more aware of their health then they can make better plans in regard to their lifestyles, diet and treatments. If they will get aware in advance about any of the disease, then they can plan well for their treatment. 

Clinical and healthcare benefits

Due to development in recent years, the new dimensions of genomics and genetic data have emerged in the field of healthcare. The researchers are using genetic information in developing medicines for diseases. Genetic information is also used to identify the people who may develop any different disease so that better plans could be made for their treatment. Scientific advancements can find a genetic cause of disease and the genetic information also helps in finding the cure or treatment of these diseases. With the help of genetic information, the couples can avoid pregnancy or they can rearrange their plan for intercourse, so as to avoid the chances of giving birth to a child with genetic disease. There are many therapies in which the genetic defects in the cells of the body are corrected or cured. Also, these defective cells of the body can be replaced with the healthy or functioning genes for the proper working of the body.

Better Research

Through more scientifically sound research, we can find more about detention, prevention and treatment of genetic diseases. The genetic research can be done with the minimal tissues of the body. Better research could be done by creating a database of valid DNA, and these DNAs must be taken with the prior consent of the owner. These databases will make this genetic research cheaper than the traditional research where research is done by collecting and analyzing data manually. Also, it will make the research more reliable as the accuracy of the data will be increased. 

Public Health

Genetic information can also be used in matters related to public health. Apart from the individual’s health, it can be also used to know about the status of health of the general public. The genetic data can show the trend of any genetic disease and its causes in the population. So, this can enable the government to provide better treatment and to not let it spread further. 

Criminal Justice and Forensics

The advancement made in the field of forensic science has made a great contribution to the justice system. This development has made it possible to use genetic-based evidence in the area of criminal justice. The genetic information or genetic-based evidence can be used in an investigation, prosecution and detection of crime such as rape and murder. Apart from using it in an investigation, prosecution and detention in criminal cases, it can also be used to release someone from false charges. 

Forensic law experts and forensic scientists believe that the collection and usage of genetic information in criminal cases should be governed by some set of ethical principles. These ethical principles must ensure that the anonymity of an individual is maintained and a person with less anonymity must be given some special protection. These principles should also include the concept of consent. The investigating officers should always obtain consent from an individual collecting the DNA sample. These principles will maintain the balance between the two things. First, criminal justice and second, the right to genetic privacy.

The use of genetic data in criminal trials may deliver justice by protecting public interests. But it has also made constant threats to some of the basic human rights such as the right to privacy, bodily integrity and autonomy of the person. 

Advantages and disadvantages

The following are the advantages which a person gets from his genetic information:

1. One can know about the disease, illness or his health status through his genetic information.
2. It may make a person more conscious of his health.
3. A person can know about his origin and distant family members. 
4. One’s information can be used for medical research.
5. If a person will get to know about his disease in the beginning then he will take more preventive measures to cure it.

The following are disadvantages of genetic information:

1. The genetic data comprises the DNA and genes of a person. And if someone has access over them, then he can know everything about one’s private life. 
2. Generally, people use their genetic information to know the status of their health and for this, they take direct-to-consumer genetic tests (DTC) which are not 100% accurate. And this also gives access to private information to the third party. 
3. This information gives unexpected information about health, family members which may hurt a person. 
4. If the genetic data gets stolen or someone has the unauthorised access over it then it will surely affect the privacy of an individual.
5. The tests for genetic information are not wholly true. And people make decisions for their life based on these reports. 
6. The genetic data contains personal information of an individual of his present, past and future. And if there is a disclosure of such information, then this may lead to some negative effect in their lives by getting an unexpected response from employers, insurance companies, government and others. 

Genetic data and privacy concerns

Genetic data is not ordinary data; it is unique as the genetic data is extracted from the DNA of the persons. No individual has the same DNA except in the case of twins. Genetic data of a person holds very sensitive information about him and his family. The development in science has made it possible to use genetic information in the field of medicine, health, research and administration of justice. Through these advancements, genetic testing has become cheaper and easier due to which the DNA of the person can be easily collected and stored in the database. But these developments have created a concern for an individual’s genetic privacy. Genetic privacy includes the protection of an individual’s and his family’s personal information, preventing disclosure of his medical and non-medical information and restricting third parties to access such personal information. The direct-to-consumer genetic tests are also constant threats to the genetic privacy of an individual. And by submitting our DNA to a testing company or to any clinic, we give access to them. It exposes all information about an individual whether it’s physical or mental. 

Conclusion 

It is quite surprising that a small DNA sample of our body can reveal very crucial and sensitive information about us. The genetic information can be used in different fields like health and medicine, research, judicial trials but these uses have created a big threat to an individual’s privacy. As genetic science is developing, genetic tests can be conducted through small tissues of our body. This has made the situation more crucial. It can be used by insurance companies, employers or any third party in the wrong way. The genetic information is different from the other types of personal information. Therefore, special attention should be paid to it. 

New policies are developing to regulate direct-to-consumer testing for protecting genetic privacy. However, the consumer should go through the company’s privacy policy before signing up to prevent mishappening in future. And if the company violates its own policy, one can drag the company in the court under the appropriate law. If an individual is going with the direct-to-consumer testing, then he should prefer it from the well-known companies as smaller companies may not provide an effective privacy policy. Similarly, one should take precautions while taking a genetic test at any clinic, he should carefully go through the clinic’s privacy policy. The genetic information contains very sensitive information about an individual so proper precautions should be made to ensure genetic privacy.

References 

• http://sitn.hms.harvard.edu/flash/2018/understanding-ownership-privacy-genetic-data/

• https://ghr.nlm.nih.gov/primer/dtcgenetictesting/directtoconsumer#:~:text=Direct-to-consumer%20genetic%20testing%20provides%20people%20access%20to%20their,direct-to-consumer%20genetic%20tests%20for%20a%20variety%20of%20purposes.
• https://medwinpublishers.com/IJFSC/IJFSC16000130.pdf

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