Violation of human genetic rights
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Monday, the 10th of December , will be observed as the International Human Rights Day with the theme “Stand Up For Human Rights”. This day is celebrated to fight for the various types of rights human beings have, to promote their awareness and to improve the physical, genetic, biological, social, cultural and political wellbeing of the human species. In this essay, I shall be dwelling on the rights humans have at the level of genes called as Human Genetic Rights (HGRs) adopted by the United Nations General Assembly in the year 1998, fifty years after the declaration of Universal Human Rights in 1948. The basic purpose of this essay is to promote the awareness about these rights to the people and their violation due to advancements in clinical genetics and human genome editing.
The recognition of ethical issues vis-à-vis human genomics and technology came into existence due to tremendous advancements in human genetic research including reprogenetics. The emergence of concepts like genetically engineered or designer babies and evolving status of human germ line editing is quite controversial. It has given rise to a spectrum of ethical implications and is labelled as a grave abuse of human rights.
We know that genes or DNA make a unique blueprint for every physical and biological characteristic of an individual and are responsible for thousands of genetic diseases in human. A genetic disorder is a very rare disease caused by certain defects and abnormalities in the human genome. These diseases may be somatic or germ line in nature and result either from a change in a single gene or even the alteration of a single nucleotide of a gene or a multiple of genes and can be cause of a serious and life threatening medical condition.
However, nature is the best remedy itself for these genetic disorders operating through natural selection. Man, being enough curious to peep very deep into nature and starting playing with nature (altering the genes) with the desire for better performance and production of designer population. The indiscriminate use of gene technology has opened the door to the loss of human values and genetic diversity. Geneticists have identified the fear of “neo-eugenic future” and “danger of genetic misuse” due to recent advancements in genome editing in the world. Similarly modifying the genes to improve learning or memory and even delay aging and death is another hallmark of human genetic intervention. Perhaps man is mad to create genetically enhanced human (but unnatural) which might finally endanger the human survival on this planet.
Therefore, genome editing is an offshoot of human intervention to nature and evolved to treat genetic diseases for betterment and improvement of human race. Gene technology can be explained as the alteration of human genetic material (DNA) to modify or eliminate undesirable characteristics of a gene or diseases, to produce desirable new ones by adding extra copies or a whole gene or to treat the abnormality by gene therapy for a better health. Although achievements of gene technologies are remarkable in improving human health and transforming society but at the same time it has given rise to serious ethical implications and violated basic human rights (genetic). Because genetic privacy is a fundamental human right as are the other categories of human rights.
Let us pose a question to ourselves: why genetic privacy needs to be protected for every human being. The answer is that genetic information is ultra-sensitive and a given DNA can reveal an extraordinary information like personal capability, longevity, familial relationships, medical/illness history, genetic predisposition for crimes and illicit behaviour, predisposition for certain diseases and mental sickness about a particular person. Such information, if explored and made available in public domains, is prone to be misused and abused. The other aspect is that slight variations in the human genome across the individuals contribute to the uniqueness and individuality of each human being-the rationale for human genetic rights. Therefore, reaffirming the fundamental principle of respect for human dignity and the prohibition of all forms of discrimination based on genetic characteristics needs to be protected. Many international declarations and regulations to ensure the genome dignity and privacy are already in vogue in world for the last two decades. The prominent being Council of Europe’s Convention, UNESCO’s bioethics committee, UNESCO’s International Declaration on the Human Genome and Human Rights (1997), the UNO’s Universal Declaration on the Human Genome and Human Rights (1998) and many other public organizations and legislations. The HGR’s were, therefore, recognized by the UN to protect the dignity and identity of all human beings and guarantee respect for their integrity and privacy with regard to the use of gene technology and biomedicine-the two major human genetic modification tools. The HGR’s let us know that all people have the rights to protection against various measures such as genetic tests, genetic counselling, assisted reproductive technology, forced sterilization, made to order or designer embryos or fetuses at genetic clinics and centres. HGR’s ensure that genetic screening and tests where-ever required for betterment of health meet the generally accepted criteria of scientific validity subjected to personal consent, regular monitoring and legislature.
Although human genetic modification techniques have revolutionized human biology by unravelling deep problems/secrets at the level of genes and treating them, it has also opened the doorway of various ethical challenges (bioethics) and political approaches to life (biopolitics). The most controversial is reproductive gene editing and designer babies. The need of the hour, is, therefore, to recognize the genetic values of human life that are at risk or put to genetic misuse due to various human genome modification techniques.
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This article appeared in Kashmir Reader on eve of human rights day on December 10, 2018
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Monday, the 10th of December , will be observed as the International Human Rights Day with the theme “Stand Up For Human Rights”. This day is celebrated to fight for the various types of rights human beings have, to promote their awareness and to improve the physical, genetic, biological, social, cultural and political wellbeing of the human species. In this essay, I shall be dwelling on the rights humans have at the level of genes called as Human Genetic Rights (HGRs) adopted by the United Nations General Assembly in the year 1998, fifty years after the declaration of Universal Human Rights in 1948. The basic purpose of this essay is to promote the awareness about these rights to the people and their violation due to advancements in clinical genetics and human genome editing.
The recognition of ethical issues vis-à-vis human genomics and technology came into existence due to tremendous advancements in human genetic research including reprogenetics. The emergence of concepts like genetically engineered or designer babies and evolving status of human germ line editing is quite controversial. It has given rise to a spectrum of ethical implications and is labelled as a grave abuse of human rights.
We know that genes or DNA make a unique blueprint for every physical and biological characteristic of an individual and are responsible for thousands of genetic diseases in human. A genetic disorder is a very rare disease caused by certain defects and abnormalities in the human genome. These diseases may be somatic or germ line in nature and result either from a change in a single gene or even the alteration of a single nucleotide of a gene or a multiple of genes and can be cause of a serious and life threatening medical condition.
However, nature is the best remedy itself for these genetic disorders operating through natural selection. Man, being enough curious to peep very deep into nature and starting playing with nature (altering the genes) with the desire for better performance and production of designer population. The indiscriminate use of gene technology has opened the door to the loss of human values and genetic diversity. Geneticists have identified the fear of “neo-eugenic future” and “danger of genetic misuse” due to recent advancements in genome editing in the world. Similarly modifying the genes to improve learning or memory and even delay aging and death is another hallmark of human genetic intervention. Perhaps man is mad to create genetically enhanced human (but unnatural) which might finally endanger the human survival on this planet.
Therefore, genome editing is an offshoot of human intervention to nature and evolved to treat genetic diseases for betterment and improvement of human race. Gene technology can be explained as the alteration of human genetic material (DNA) to modify or eliminate undesirable characteristics of a gene or diseases, to produce desirable new ones by adding extra copies or a whole gene or to treat the abnormality by gene therapy for a better health. Although achievements of gene technologies are remarkable in improving human health and transforming society but at the same time it has given rise to serious ethical implications and violated basic human rights (genetic). Because genetic privacy is a fundamental human right as are the other categories of human rights.
Let us pose a question to ourselves: why genetic privacy needs to be protected for every human being. The answer is that genetic information is ultra-sensitive and a given DNA can reveal an extraordinary information like personal capability, longevity, familial relationships, medical/illness history, genetic predisposition for crimes and illicit behaviour, predisposition for certain diseases and mental sickness about a particular person. Such information, if explored and made available in public domains, is prone to be misused and abused. The other aspect is that slight variations in the human genome across the individuals contribute to the uniqueness and individuality of each human being-the rationale for human genetic rights. Therefore, reaffirming the fundamental principle of respect for human dignity and the prohibition of all forms of discrimination based on genetic characteristics needs to be protected. Many international declarations and regulations to ensure the genome dignity and privacy are already in vogue in world for the last two decades. The prominent being Council of Europe’s Convention, UNESCO’s bioethics committee, UNESCO’s International Declaration on the Human Genome and Human Rights (1997), the UNO’s Universal Declaration on the Human Genome and Human Rights (1998) and many other public organizations and legislations. The HGR’s were, therefore, recognized by the UN to protect the dignity and identity of all human beings and guarantee respect for their integrity and privacy with regard to the use of gene technology and biomedicine-the two major human genetic modification tools. The HGR’s let us know that all people have the rights to protection against various measures such as genetic tests, genetic counselling, assisted reproductive technology, forced sterilization, made to order or designer embryos or fetuses at genetic clinics and centres. HGR’s ensure that genetic screening and tests where-ever required for betterment of health meet the generally accepted criteria of scientific validity subjected to personal consent, regular monitoring and legislature.
Although human genetic modification techniques have revolutionized human biology by unravelling deep problems/secrets at the level of genes and treating them, it has also opened the doorway of various ethical challenges (bioethics) and political approaches to life (biopolitics). The most controversial is reproductive gene editing and designer babies. The need of the hour, is, therefore, to recognize the genetic values of human life that are at risk or put to genetic misuse due to various human genome modification techniques.
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This article appeared in Kashmir Reader on eve of human rights day on December 10, 2018
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