This article is written by Tanmeet Singh Sachdeva of 1^st Semester of  University of Surrey, an intern under Legal Vidhiya

ABSTRACT

The research on genetics is advancing and developing at a fast pace which has now allowed personal genetic information has now become much more easily available and accessible. These developments have now brought upon a major concern and raised serious issues about genetic privacy. Whilst there is no doubt that research upon personal genetic information could be extremely promising for treatment of individuals, there is the other side of the coin which is that genetic data can be accessible, and this can cause several issues such as genetic discrimination. This article aims to look into what the legal system is doing to protect individuals genetic privacy and ensuring that there is no genetic discrimination. The article looks to define the meaning of genetic privacy and genetic discrimination, and then looks to outline the importance of protecting personal genetic data from being exploited. The article also looks at the developments made India in understanding privacy rights and looks into the future of genetic privacy.

Keywords

Genetic privacy, Genetic discrimination, Data protection, Legal frameworks, Indian law, Enforcement mechanisms, Privacy rights, Judicial decisions, Confidentiality, sensitive data

INTRODUCTION

Across the globe, many countries are fixated on trying to research into the future which could help their countries profit from the future benefits. It is clear to see for all that the future of genetics is arriving fast with advancements on the subject picking up pace. The information regarding genetics provides us with many benefits such from helping someone in particular as we understand their genes to preventing diseases from happening.[1] However, this information is very sensitive too and there are far too many concerns about privacy and misuse. As this information can provide details about not only a person’s current health but also revealing details about future health conditions and insights into sexual life also.[2]

This is an important area where the Indian law must concentrate on and prioritise as many countries have been doing such as the United States who have created a piece of legislation to prevent genetic discrimination from happening with the Genetic Information Non-discrimination Act.[3] 

DEFINITION AND CRITERIA FOR GENETIC PRIVACY AND DISCRIMINATION

Genetic privacy is defined as the protection for the gathering, storing and using, of genomic data (including DNA isolated from human tissue) in order to support all critical aspects of genetic research, diagnosis, treatment, and reproduction.[4] This can include information regarding an individual’s health, family history etc. The importance of this kind of privacy has grown over the past several decades as advances in technology have made it possible to identify genetic information that was previously undetected at the molecular level. Previously, there was a very limited understanding to an individual’s genetics and family history of diseases. But recently there have been technological advances to analyse individual genetic data quickly, cheaply, and thoroughly. This change has brought up fresh ethical questions about confidentiality and privacy. As genetic data is deeply personal its exposure can have consequences not only to the individual whose data this is but to others such as family members. It is important for people to have control over who accesses their genetical information.

Genetic discrimination is a concept of treating a person or persons differently or not fairly due to their genetic information, this is done through many various ways such as disadvantaging them in social, economic or professional contexts.[5] The concept of genetic discrimination can be understood through two definitions which explains discrimination. Firstly, through the civil rights definition of discrimination which views discrimination as unjust and socially unacceptable. Genetic discrimination under this definition would mean targeting individuals who have certain diseases and making them outcasts because they are different to the rest of us.[6] For example, a person who is genetically predisposition will be ignored within his community and may be shamed upon or humiliated and may fall lower in the social ranks. The second definition where genetic discrimination can come under is the actuarial definition. This is where the discrimination is applied in a commercial setting Employers, for example, may not provide a job to someone who is genetically predisposition to certain diseases as the employer may believe that they are not good enough for the work compared to someone who is not genetically predisposition to certain diseases.[7] Insurance companies may also be discriminatory and may not allow coverage or even charge more expensive premiums based on genetic data because that can give an idea of future health risks. While the insurance company may feel that they have a right to do so it is morally incorrect.

LEGAL BASIS FOR GENETIC PRIVACY PROTECTION

As the research for this area continues, it is vital for the law to grow too, and it is evolving worldwide including India. Although there is yet to be a specific statute to cover and address the problems of genetic privacy there are several ways the law has acknowledges the problems and offers its help.

Firstly, in India the law accepts that everyone should have privacy, as this is within the constitutional rights. Justice K.S. Puttaswamy v. Union of India,[8] is a case demonstrating how important and essential privacy is. This case is a great demonstration that privacy to data can include many forms of private data like personal information, health and genetic data. The case demonstrates here that there is an acknowledgement of individuals autonomy over their personal data and the right for their genetic information to be collected.

Furthermore, the Digital Personal Data Protection Act 2023[9] serves by protecting a person’s data to be used by people who are not authorised to do so. This can now include genetic data as it is under the topic of “sensitive personal data.”  The act states an individual should consent for their personal information to be used by another and that the person giving consent should be told how their information will be used. Furthermore, the law emphasises that the personal data should only be used if it is necessary to do so. In addition, an individual should have the ability to access their personal information anytime they want. In addition, they should have the ability to revoke permission for it to be stored by another anytime they want. In addition, as genetic data is classified as sensitive personal information. These rules ensure that those who collect the genetic information such as healthcare workers or testing companies do so appropriately and do so with the consent of the individuals whose genetical information their processing.

KEY JUDICIAL DECISIONS

As mentioned previously there is no specific act that is instrumental to the protection of genetical information and to the prevention of genetical discrimination. However, there are key cases that have been influential.

Firstly, the case of Mr. X v. Hospital Z[10] involved a patient who was HIV-positive, and the hospital disclosed this to the patient’s family. The court held while having privacy is essential this must be balanced with the right of interests. The court in this case established that there needs to be respect for a person’s medical information. 

In addition, the case of Vikram Bakshi v Sonia Khosla[11] is an important case, while it does not look to address concerns surrounding genetic privacy it does however deal with the issue of confidentiality in business which as we have mentioned is an area where discrimination can occur. In this case the defendant was involved in a business issue and the case was around the issue of a breach of confidentiality which was a violation and the court agreed that there was a violation of privacy. The underlying principle of confidentiality can be extended to genetic privacy.

Another, landmark case was Sharda v Dharmpal[12] which was around a divorce case. The wife, Sharda, argued that Dharmpal was mentally unstable, and the trial court directed him to go through a medical examination which he refused as he believed this has to be a violation of his privacy and the supreme court agreed with him emphasising that while public interest is important, a person’s privacy is just as important. The decision here highlights that medical examination will only work if a person gives consent, showing the courts emphasizes autonomy over the research of personal data despite it being in the interest of the public.        

ENFORCEMENT MECHANISMS AND REMEDIES

India ensures that the laws addressing genetic discrimation are followed as India provides several remedies both civil and criminal which look to protect a person’s privacy and aim  to promote individual autonomy.

Firstly, there are civil remedies in place which aim to enforce the law. Injunctions are a type of remedy which victims whose genetic privacy has been exploited and genetic discrimination has occurred can ask the court to impose and this will make the offender stop.

Another form of civil remedy is damages which is when victims of genetic privacy can seek compensation for the harm suffered which may be a loss of reputation or costs of not getting a job because the employer was discriminatory, this can also include the cost of emotional distress.

Another form of civil remedy is specific performance which is where genetic data has been shared causing a breach in confidentiality, this specific remedy would ensure the party maintains confidentiality.

Fines will also be given to those who fail to comply with data protection, which includes genetic information.

RECENT DEVELOPMENTS

The law in India has evolved significantly in when looking at the protection of genetic privacy whilst also in preventing genetic discrimination. The law has developed significantly and to show for this is the recent legislation, which makes sure that consent is given before sensitive information, which includes genetic information, can be collected, processed, or shared. This thereby promotes individual autonomy.

However, the law is still to fully cover the topic regarding genetic discrimination as while there are plenty of legislation trying to protect genetic privacy there are not many that look to tackle the specific problem of genetic discrimination and India must look at other countries such as the United States who have done so by creating legislation and other countries also. There has also not been a specific case regarding either area.

CONCLUSION

Processing of genetic information may provide a variety of lucrative benefits for the general public, however every coin as an opposite side, similarly there are some concerns regarding this area as demonstrated by the quick advances in genetic research and biotechnology. The benefit of genetic information is that it presents an opportunity for potential patients to be free of any future illness and customised treatment, however the concerns are that it raises serious privacy problems, especially when it comes to genetic discrimination. Similarly, to how other countries have proceeded with this area of research, India’s legislative frameworks for genetic privacy protection are still developing in response to the challenges of these advancements.

The concerns regarding genetic privacy can be seen to be effectively addressed by the Indian legal framework. This can be through many different sources of the law, one that provides it support is case law. The cases mentioned in this article highlights the importance of privacy and that it is important for every member of the public to have it. Recently, there have been strong evolvements in the law regarding this area showing that genetic data is considered sensitive personal information.

Despite, the developments made by India and India’s legal system there are still some problems which they have not yet tackled, and this is placing a clear ban on genetic discrimination, and this is in areas such as insurance and employment, which is solved by other countries in the world such as the United States who have made this clear through the legislation. Without regulations in place, genetic data may be misused, and discrimination may become more likely as genetic testing becomes more widely available.

In conclusion, even though India has made great strides towards creating legal safeguards for genetic privacy, more judicial and legislative advances are required to completely protect people from genetic discrimination and privacy violations. In order to meet the ethical and legal problems offered by global norms, the nation must continue to improve its legal structures.

REFERENCES

1. Hamer D, Science of Desire: The Gay Gene and The Biology of Behaviour 13 (2011)
2. Khoury M et al., Quantifying the health benefits of genetic tests: The importance of a population perspective, 8 Genetics Med. 191, 191 (2006)
3. Lunshof J et al., From genetic privacy to open consent, 9 Nature Revs. Genetics 406, 406 (2008) 
4. Rothstein M & Anderlik M, What is genetic discrimination, and when and how can it be prevented? 3 Genetics Med. 354, 354 (2001)

---

[1] Muin J. Khoury et al., Quantifying the health benefits of genetic tests: The importance of a population perspective, 8 Genetics Med. 191, 191 (2006).

[2] Dean Hamer, Science of Desire: The Gay Gene and The Biology of Behaviour 13 (2011).

[3] Genetic Information Nondiscrimination Act of 2008, Pub. L. No. 110-233, 122 Stat. 881 (2008).

[4] Jeantine E. Lunshof et al., From genetic privacy to open consent, 9 Nature Revs. Genetics 406, 406 (2008) 

[5] Genetic Discrimination, 7 Minn J.L. Sci & Tech, 654 (2006).

[6] Ibid

[7] Mark A. Rothstein & Mary R. Anderlik, What is genetic discrimination, and when and how can it be prevented? 3 Genetics Med. 354, 354 (2001).

[8] Justice K.S. Puttaswamy (Retd.) v. Union of India, (2017) 10 S.C.C. 1 (India).

[9] Digital Personal Data Protection Act, 2023, No. 22, Acts of Parliament, 2023 (India).

[10] Mr. X v. Hospital Z, (1998) 8 S.C.C. 296 (India).

[11] Vikram Bakshi v. Sonia Khosla, 2006 (32) P.T.C. 1 (Del.)

[12] Sharda v. Dharmpal, (2003) 4 S.C.C. 493 (India)

LEGAL FRAMEWORKS FOR PROTECTING GENETIC PRIVACY AND PREVENTING GENETIC DISCRIMINATION

This article is written by Tanmeet Singh Sachdeva of 1^st Semester of  University of Surrey, an intern under Legal Vidhiya

ABSTRACT

The research on genetics is advancing and developing at a fast pace which has now allowed personal genetic information has now become much more easily available and accessible. These developments have now brought upon a major concern and raised serious issues about genetic privacy. Whilst there is no doubt that research upon personal genetic information could be extremely promising for treatment of individuals, there is the other side of the coin which is that genetic data can be accessible, and this can cause several issues such as genetic discrimination. This article aims to look into what the legal system is doing to protect individuals genetic privacy and ensuring that there is no genetic discrimination. The article looks to define the meaning of genetic privacy and genetic discrimination, and then looks to outline the importance of protecting personal genetic data from being exploited. The article also looks at the developments made India in understanding privacy rights and looks into the future of genetic privacy.

Keywords

Genetic privacy, Genetic discrimination, Data protection, Legal frameworks, Indian law, Enforcement mechanisms, Privacy rights, Judicial decisions, Confidentiality, Sensative Data

INTRODUCTION

Across the globe, many countries are fixated on trying to research into the future which could help their countries profit from the future benefits. It is clear to see for all that the future of genetics is arriving fast with advancements on the subject picking up pace. The information regarding genetics provides us with many benefits such from helping someone in particular as we understand their genes to preventing diseases from happening.[1] However, this information is very sensitive too and there are far too many concerns about privacy and misuse. As this information can provide details about not only a person’s current health but also revealing details about future health conditions and insights into sexual life also.[2]

This is an important area where the Indian law must concentrate on and prioritise as many countries have been doing such as the United States who have created a piece of legislation to prevent genetic discrimination from happening with the Genetic Information Non-discrimination Act.[3] 

DEFINITION AND CRITERIA FOR GENETIC PRIVACY AND DISCRIMINATION

Genetic privacy is defined as the protection for the gathering, storing and using, of genomic data (including DNA isolated from human tissue) in order to support all critical aspects of genetic research, diagnosis, treatment, and reproduction.[4] This can include information regarding an individual’s health, family history etc. The importance of this kind of privacy has grown over the past several decades as advances in technology have made it possible to identify genetic information that was previously undetected at the molecular level. Previously, there was a very limited understanding to an individual’s genetics and family history of diseases. But recently there have been technological advances to analyse individual genetic data quickly, cheaply, and thoroughly. This change has brought up fresh ethical questions about confidentiality and privacy. As genetic data is deeply personal its exposure can have consequences not only to the individual whose data this is but to others such as family members. It is important for people to have control over who accesses their genetical information.

Genetic discrimination is a concept of treating a person or persons differently or not fairly due to their genetic information, this is done through many various ways such as disadvantaging them in social, economic or professional contexts.[5] The concept of genetic discrimination can be understood through two definitions which explains discrimination. Firstly, through the civil rights definition of discrimination which views discrimination as unjust and socially unacceptable. Genetic discrimination under this definition would mean targeting individuals who have certain diseases and making them outcasts because they are different to the rest of us.[6] For example, a person who is genetically predisposition will be ignored within his community and may be shamed upon or humiliated and may fall lower in the social ranks. The second definition where genetic discrimination can come under is the actuarial definition. This is where the discrimination is applied in a commercial setting Employers, for example, may not provide a job to someone who is genetically predisposition to certain diseases as the employer may believe that they are not good enough for the work compared to someone who is not genetically predisposition to certain diseases.[7] Insurance companies may also be discriminatory and may not allow coverage or even charge more expensive premiums based on genetic data because that can give an idea of future health risks. While the insurance company may feel that they have a right to do so it is morally incorrect.

LEGAL BASIS FOR GENETIC PRIVACY PROTECTION

As the research for this area continues, it is vital for the law to grow too, and it is evolving worldwide including India. Although there is yet to be a specific statute to cover and address the problems of genetic privacy there are several ways the law has acknowledges the problems and offers its help.

Firstly, in India the law accepts that everyone should have privacy, as this is within the constitutional rights. Justice K.S. Puttaswamy v. Union of India,[8] is a case demonstrating how important and essential privacy is. This case is a great demonstration that privacy to data can include many forms of private data like personal information, health and genetic data. The case demonstrates here that there is an acknowledgement of individuals autonomy over their personal data and the right for their genetic information to be collected.

Furthermore, the Digital Personal Data Protection Act 2023[9] serves by protecting a person’s data to be used by people who are not authorised to do so. This can now include genetic data as it is under the topic of “sensitive personal data.”  The act states an individual should consent for their personal information to be used by another and that the person giving consent should be told how their information will be used. Furthermore, the law emphasises that the personal data should only be used if it is necessary to do so. In addition, an individual should have the ability to access their personal information anytime they want. In addition, they should have the ability to revoke permission for it to be stored by another anytime they want. In addition, as genetic data is classified as sensitive personal information. These rules ensure that those who collect the genetic information such as healthcare workers or testing companies do so appropriately and do so with the consent of the individuals whose genetical information their processing.

KEY JUDICIAL DECISIONS

As mentioned previously there is no specific act that is instrumental to the protection of genetical information and to the prevention of genetical discrimination. However, there are key cases that have been influential.

Firstly, the case of Mr. X v. Hospital Z[10] involved a patient who was HIV-positive, and the hospital disclosed this to the patient’s family. The court held while having privacy is essential this must be balanced with the right of interests. The court in this case established that there needs to be respect for a person’s medical information. 

In addition, the case of Vikram Bakshi v Sonia Khosla[11] is an important case, while it does not look to address concerns surrounding genetic privacy it does however deal with the issue of confidentiality in business which as we have mentioned is an area where discrimination can occur. In this case the defendant was involved in a business issue and the case was around the issue of a breach of confidentiality which was a violation and the court agreed that there was a violation of privacy. The underlying principle of confidentiality can be extended to genetic privacy.

Another, landmark case was Sharda v Dharmpal[12] which was around a divorce case. The wife, Sharda, argued that Dharmpal was mentally unstable, and the trial court directed him to go through a medical examination which he refused as he believed this has to be a violation of his privacy and the supreme court agreed with him emphasising that while public interest is important, a person’s privacy is just as important. The decision here highlights that medical examination will only work if a person gives consent, showing the courts emphasises autonomy over the research of personal data despite it being in the interest of the public.        

ENFORCEMENT MECHANISMS AND REMEDIES

India ensures that the laws addressing genetic discrimation are followed as India provides several remedies both civil and criminal which look to protect a person’s privacy and aim  to promote individual autonomy.

Firstly, there are civil remedies in place which aim to enforce the law. Injunctions are a type of remedy which victims whose genetic privacy has been exploited and genetic discrimination has occurred can ask the court to impose and this will make the offender stop.

Another form of civil remedy is damages which is when victims of genetic privacy can seek compensation for the harm suffered which may be a loss of reputation or costs of not getting a job because the employer was discriminatory, this can also include the cost of emotional distress.

Another form of civil remedy is specific performance which is where genetic data has been shared causing a breach in confidentiality, this specific remedy would ensure the party maintains confidentiality.

Fines will also be given to those who fail to comply with data protection, which includes genetic information.

RECENT DEVELOPMENTS

The law in India has evolved significantly in when looking at the protection of genetic privacy whilst also in preventing genetic discrimination. The law has developed significantly and to show for this is the recent legislation, which makes sure that consent is given before sensitive information, which includes genetic information, can be collected, processed, or shared. This thereby promotes individual autonomy.

However, the law is still to fully cover the topic regarding genetic discrimination as while there are plenty of legislation trying to protect genetic privacy there are not many that look to tackle the specific problem of genetic discrimination and India must look at other countries such as the United States who have done so by creating legislation and other countries also. There has also not been a specific case regarding either area.

CONCLUSION

Processing of genetic information may provide a variety of lucrative benefits for the general public, however every coin as an opposite side, similarly there are some concerns regarding this area as demonstrated by the quick advances in genetic research and biotechnology. The benefit of genetic information is that it presents an opportunity for potential patients to be free of any future illness and customised treatment, however the concerns are that it raises serious privacy problems, especially when it comes to genetic discrimination. Similarly, to how other countries have proceeded with this area of research, India’s legislative frameworks for genetic privacy protection are still developing in response to the challenges of these advancements.

The concerns regarding genetic privacy can be seen to be effectively addressed by the Indian legal framework. This can be through many different sources of the law, one that provides it support is case law. The cases mentioned in this article highlights the importance of privacy and that it is important for every member of the public to have it. Recently, there have been strong evolvements in the law regarding this area showing that genetic data is considered sensitive personal information.

Despite, the developments made by India and India’s legal system there are still some problems which they have not yet tackled, and this is placing a clear ban on genetic discrimination, and this is in areas such as insurance and employment, which is solved by other countries in the world such as the United States who have made this clear through the legislation. Without regulations in place, genetic data may be misused, and discrimination may become more likely as genetic testing becomes more widely available.

In conclusion, even though India has made great strides towards creating legal safeguards for genetic privacy, more judicial and legislative advances are required to completely protect people from genetic discrimination and privacy violations. In order to meet the ethical and legal problems offered by global norms, the nation must continue to improve its legal structures.

REFERENCES

1. Hamer D, Science of Desire: The Gay Gene and The Biology of Behaviour 13 (2011)
2. Khoury M et al., Quantifying the health benefits of genetic tests: The importance of a population perspective, 8 Genetics Med. 191, 191 (2006)
3. Lunshof J et al., From genetic privacy to open consent, 9 Nature Revs. Genetics 406, 406 (2008) 
4. Rothstein M & Anderlik M, What is genetic discrimination, and when and how can it be prevented? 3 Genetics Med. 354, 354 (2001)

---

[1] Muin J. Khoury et al., Quantifying the health benefits of genetic tests: The importance of a population perspective, 8 Genetics Med. 191, 191 (2006).

[2] Dean Hamer, Science of Desire: The Gay Gene and The Biology of Behaviour 13 (2011).

[3] Genetic Information Nondiscrimination Act of 2008, Pub. L. No. 110-233, 122 Stat. 881 (2008).

[4] Jeantine E. Lunshof et al., From genetic privacy to open consent, 9 Nature Revs. Genetics 406, 406 (2008) 

[5] Genetic Discrimination, 7 Minn J.L. Sci & Tech, 654 (2006).

[6] Ibid

[7] Mark A. Rothstein & Mary R. Anderlik, What is genetic discrimination, and when and how can it be prevented? 3 Genetics Med. 354, 354 (2001).

[8] Justice K.S. Puttaswamy (Retd.) v. Union of India, (2017) 10 S.C.C. 1 (India).

[9] Digital Personal Data Protection Act, 2023, No. 22, Acts of Parliament, 2023 (India).

[10] Mr. X v. Hospital Z, (1998) 8 S.C.C. 296 (India).

[11] Vikram Bakshi v. Sonia Khosla, 2006 (32) P.T.C. 1 (Del.)

[12] Sharda v. Dharmpal, (2003) 4 S.C.C. 493 (India)

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