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Written in the Genes

Gene sequencing will be to the 21st century what the stethoscope was to the 20th. A new book explores its multiple ethical issues

Book Review, The $1,000 Genome, Kevin Davies, Nature Genetics, Sai Baba, rationalists, ethical issues Gene sequencing will be to the 21st century what the stethoscope was to the 20th, except that the stetho is value-neutral.

Book: The $1,000 Genome

Author: Kevin Davies

Publisher: Simon and Schuster

Pages: 340 pages

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When India’s rationalists, who are now under lethal threat, first mobilised decades ago, they got rave reviews in the media for unravelling godmen like Sai Baba. But their real target was the astrology pandemic which had India in thrall, and which still causes almost every TV channel to have a horoscope programme every morning. Indeed, in colonial times, Company administrators joked about the incapacity of maharajas to even go for a tiger shoot without pundits reading the royal natal chart. But even rationalists — and especially rationalists — will not deny that each one of us does have a horoscope. It is encoded in our genes and, unlike the certainties that astrologers profess, it suggests probabilities. How likely are you to develop type 2 diabetes? And are you almost certain to die of multiple myeloma? Sequencing your genes can offer some pretty good betting tips for life’s leading uncertainties.

Gene sequencing will be to the 21st century what the stethoscope was to the 20th, except that the stetho is value-neutral. Kevin Davies, founding editor of the premier journal Nature Genetics, which he headed in its first five years, explores the multiple ethical issues which the technology will encounter as it becomes more and more accessible. The timeline of accessibility is a sharply rising hyperbola. The Human Genome Project was proposed in 1984, rolled out in 1990 and wrapped up in 2003. The biggest collaborative life sciences project ever, armed with the academic world’s computing power, it cost at least $2.7 billion.

As the HGP neared fruition, in 2001 and 2002, the term “$1,000 genome” gained currency — retail sequencing costing so many orders of magnitude less that to be legible, the fraction must be written in exponential notation. A decade later, you can now order your genome map over the internet, and the technology is likely to be adopted by people as enthusiastically as the automatic blood sugar meter, which revolutionised the  management of one lifestyle disorder in one decade.

As always, science fiction had anticipated science. Decades ago, award-winning science fiction author Larry Niven wrote of the Autodoc, a little desktop device into which you stuck your fingers every day. Its probes took various samples, produced a diagnosis and injected substances necessary to counter incipient disease and maintain homoeostasis. The $1,000 genome isn’t half as personal, because you still need to take the USB drive containing it to a doctor. But it works, unlike the $100 laptop, which was a caution against being hung up on the numbers.

Davies’ book does have a dodgy magic number right in the title, and it offers closely reported analyses of companies like Navigenics, Oxford Nanopore, Solexa and Illumina, which have competed to reach that target. These accounts would be invaluable to biochemists who are tired of slicing and dicing rajma and arhar RNA and want to move on to the human genome but for the lay reader, the legal and political questions  raised by personal gene sequencing are more interesting.

Quite reasonably, Davies’ immediate concern is privacy. The value of genomic information is bound to rise over time and, even setting aside commercial concerns, individuals own their genomes a priori. As with heritable property, they have the right to keep other parties off the territory. But consider a hypothetical situation in which a firm or government agency is training a new recruit for a crucial role in the distant future. If his or her genome includes a time bomb, doesn’t the employer have a right to know? Or consider market investors, who expend considerable energy poring over risk data. Don’t they have the right to know what’s not on the balance sheets: are the managers of the funds or companies they bet on subject to genetic risk? Doesn’t their genome condition their decisions? There are no fair and reasonable answers to such questions yet.

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The big question is, what is the tipping point between issues related to privacy, equality and ethics, which sequencing raises, and those related to quality of life, which it predicts rather accurately? Besides, in the treatment of disease, how is the political ideal of equality to be reconciled with the scientifically accepted differences between bloodlines and phenotypes which, in the lay imagination, share space with politically dangerous ideas about race and ethnicity?

Personal genome analysis actually helps by cutting out the race angle and making the individual the focus of treatment. But if the government subsidises genome analysis for an ethnic group, it could lead to agitations and, bizarrely, the legislation of a right to genome mapping. In America, such issues manifest on the colour chart, since people of African and European extraction are each more prone to some disorders. In South Asia, they will manifest themselves in the matrix of community, caste and  (yes, again, with feeling!) religion.

Our region promises to test the ethics issues that Davies raises to the limit.

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Already, agencies in the US and Britain advertise services to gauge if your unborn child is likely to be the next Einstein. If early Einstein warning kits became available in India, the scale of the social effects would make prenatal sex determination look like mere pickpocketing.

First published on: 10-10-2015 at 12:11:44 am
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