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DESIGNER BABIES- AN ETHICAL ISSUE

The Oxford Dictionary defines “designer baby” as “a baby whose genetic makeup has been selected in order to eradicate a particular defect, or to ensure that a particular gene is present.” A designer child would theoretically be immune to hereditary diseases including haemophilia, cystic fibrosis

INTRODUCTION

The Oxford Dictionary[1] defines “designer baby” as “a baby whose genetic makeup has been selected in order to eradicate a particular defect, or to ensure that a particular gene is present.” A designer child would theoretically be immune to hereditary diseases including haemophilia, cystic fibrosis, muscular dystrophy, and many more. Height, eye color, musical ability, IQ, and other features and attributes that are thought to be desirable may also be present in the designer baby. Though the idea of a designer baby has always seemed like an unlikely fantasy, it now seems possible. According to reports, a scientist in China has already genetically engineered live fetuses’ germlines to make them HIV-free. The genetically altered twin females have already given birth, and a third one is on the way.[2] Hence, human germline editing in India may also soon make it possible to have a “designer kid.” The ramifications of having a “designer baby” need to be explored and understood because they are not entirely indicated by the meaning of the term. Genetic manipulation known as “germline editing,” which is used to produce “designer babies,” entails modifying genes in sperm and eggs at an early stage. This sort of genome moderation is genetic, which means that the altered genes may pass down to future generations in addition to the offspring produced by the process. The modified DNA would then integrate into the developing embryo’s genome, making sure that any upcoming individual conceived from that egg, sperm, or embryo will carry the variation in each of the cells.[3] Hence, it is not unexpected that for many years, individual/ man germline moderation has been universally regarded as being unacceptable on ethical and social grounds.

LEGAL AND REGULATORY SYSTEM

The huge disparities in social, cultural, and moral norms are considered by the distinct legal systems in different countries. However, it is crucial to examine the valid and administrative environment in India and other countries to comprehend the regulations and how these nations have grasped germ-line gene improvement.

India

Genetic modification of germ lines is not expressly forbidden by Indian law. However, the National Ethical Guidelines for Biomedical and Health Research on Human Participants (“Ethical Guidelines”), which were published by the government-sponsored Indian Council of Medical Research (“ICMR”), prohibits such genetic moderation. The National Guidelines for Stem Cell Research 2017 (“Guidelines”), published by the ICMR and the Department of Biotechnology, Ministry of Science & Technology (“DBT”), give the required instructions for cellular exploration, which includes gene improvement or moderation, creation of mankind germ lines. These suggestions are in addition to the Ethical instructions. Therefore, India’s non-mandatory standards forbid any research that could result in the production of designer babies.

United States of America

The adoption of germ-line modification has been slowly but steadily increasing in the USA. The U.S. Department of Health and Human Services’ National Institute of Health (“NIH”) published instructions titled “NIH Guidelines for Research Involving Recombinant or Synthetic Nucleic Acid Molecules” in 2016 that stated the NIH would not consider schemes for germline variations, which include a particular experiment to initiate genetic alterations into an individual’s reproductive cells with aim of changing the genes that pass. Although, the National Academy of Science, an NGO that advises the American government on issues of science and technology, published a report in 2017 titled “Human Genome Editing Science, Ethics and Governance” (“Report”) that advises caution given the societal and technical matters in any effort toward germ-line editing. This advice is not a prohibition, though. The Report cautiously approved germ-line modification in some circumstances.[4]

United Kingdom

After meeting specific requirements, the UK has recently become tolerant of allowing gene editing. The Human Fertilization and Embryology Act of 1990 (“HFEA”)[5] governs legal guidelines for embryonic research. The HFEA allows research initiatives involving embryos as long as they are licensed and the embryo is not held for longer than 14 days or put into a woman’s womb. The Government, was adamant on drawing a boundary linking genetic moderation and mitochondrial donation, claiming that the former does not impact any of the genes passed down through the germ line of people that are born by these techniques while the latter may still be referred to as germ line therapy.[6] The UK has taken a more liberal stance on germ-line gene editing than the rest of the world. Under rigorous licensing guidelines, it is legal to make and use genome-edited human embryos, sperm, or eggs in research in the UK.

ETHICAL ISSUES

The ethical and societal issues surrounding the production of designer babies pose a bigger obstacle to science than legal limitations. There is concern that allowing germ-line gene editing would produce kids with certain preferred features. Parents who want specific characteristics in their offspring, such as a certain height, eye color, memory, or IQ, may choose to use such genetic alteration to produce the preferred baby. This could cause a rift in a community where genetically modified individuals are more aesthetically pleasing and have greater health than non-genetically modified people. A possible worsening gap in health between the rich and the poor, both within a community and between different nations, is another risk with germ-line gene modification.[7] Numerous experts have also expressed concern about the likely unpredictability of the effects of genome moderation in human embryos,  specifically if this research is used for non-therapeutic modifications. Even when CRISPR technology is used, unexpected genetic changes are frequently introduced into the genome and which can be handed down from generation to generation. It is practicable to be worried about negative, irreversible changes to the human gene pool.

Legalizing designer babies also raises concerns about how much parental involvement is appropriate when modifying the fetus’s appearance. Parental influence over a child’s appearance and personality is currently restricted. A child’s personality is influenced by her experiences outside of the family in addition to her home setting. Since, by permitting parents to choose features for their offspring before the youngster comes into the world, other influences are less significant. According to a court decision in England, the mother of a child who was born with fetal alcohol spectrum syndrome as a result of the mother’s frequent drinking during pregnancy is not responsible for the harm the child suffered. If designer babies become commonplace, there may be an increase in the number of lawsuits brought by kids against their parents for choices taken while the child was still in the womb.

DESIGNER BABIES PRESENT AND FUTURE IN INDIA

Right now, it is obvious that any research efforts made in India towards the creation of Designer Babies would be viewed as unethical due to ICMR Guidelines. However, as there is no supporting legislation for the ICMR Guidelines, it is not unlawful. Having stated that, the Government of India’s opinion on designer babies cannot be cross-examined, although the ICMR Instructions enforcement can. According to the ICMR standards, India categorically opposes the production of designer babies. Since it is thought that the modified embryo might become more susceptible to other infections, the scientists in India are more concerned with the ethics, risk assessment, and safety of the current research. Researchers claim that there are other, more urgent diseases that may have been studied. India is of the opinion that science offers significant chances to move the entire human species toward a healthier and disease-free future Human regulation is not the province of science; the law is the appropriate tool for that. The complaints against the production of designer babies are less directed at science than they are against our incapacity to control our temptation to abuse it.

CONCLUSION

It is abundantly obvious that germline gene editing has great promise for the advancement of humanity. It is also abundantly evident that this is a very delicate matter and should be handled with extreme care. Early on, people have always questioned the merits of science, and genetic engineering does not seem to be an exception. This science will pass away prematurely if it is not permitted to continue. A science that truly has the power to save lives deserves more than a second chance. Germline gene editing is currently not feasible, at least in India, but this might alter with some creative legal and legislative ‘designing.’

Author(s) Name: Anubhuti Sharma (Vivekananda Institute of Professional Studies, New Delhi)

References:

[1] Oxford English Dictionary Twelfth Edition, 2011

[2] < https://www.technologyreview.com/s/612458/exclusive-chinese-scientists-are-creating-crispr-babies/ > accessed on January 5, 2023.

[3] ‘Genome Editing and Human Reproduction: Social and Ethical Issues Short Guide’, Nuffield Council on Bio Ethics < https://nuffieldbioethics.org/wp-content/uploads/Genome-editingand-human-reproduction-short-guide-website.pdf > accessed on January 5, 2023

[4] ‘Human Genome Editing Science, Ethics and Governance’, NAS < http://nationalacademies.org/cs/groups/ genesite/documents/webpage/gene_177260.pdf > accessed on January 6, 2023..

[5] The Human Fertilization and Embryology Act, 1990

[6] < https://www.parliament.uk/business/publications/ written-questions-answers-statements/written-question/ Lords/2015-01-22/HL4366/ > accessed on January 6, 2023

[7] < https://www.theguardian.com/science/2017/jan/08/designer-babies-ethical-horror-waiting-to-happen > accessed on January 6, 2023