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	US scientists, activists call for global ban on ''designer babies'' gene modification by Open Democracy, Reuters, agencies   Nov 2015   A group of US scientists and activists have called for a global ban on the genetic modification of human embryos, warning the technology could have an irreversible impact on humanity.   The Centre for Genetics and Society (CGS) and the activist group Friends of the Earth issued the report a day before a major international meeting in Washington to discuss the ethical and policy issues surrounding the technology.   A technological innovation that can strategically edit out specific stretches of DNA could ultimately lead to the genetic modification of children, and should be halted before it starts being used, they argued.   "Like so many powerful new technologies, gene editing holds potential for both great benefit and great harm," an open letter published by the groups said.   "The implementation of heritable human genetic modification — often referred to as the creation of ''genetically modified humans'' or ''designer babies'' — could irrevocably alter the nature of the human species and society.   "Gene editing may hold some promise for somatic gene therapy (aimed at treating impaired tissues in a fully formed person).   "However, there is no medical justification for modifying human embryos or gametes in an effort to alter the genes of a future child."   Consulting researcher with CGS and author of the report Pete Shanks said although the technology was "recently the stuff of science fiction", the fantasy could become reality.   "Avoiding illness, which we can increasingly do, is very different than manufacturing to order," he said.   "Kids are unique and should be celebrated for who they are. "Parenting is challenging — in a good way. It''s about helping your kids be themselves, not some fantasy you invented.   "Once the process [of gene modification] begins, there will be no going back. This is a line we must not cross."   CGS executive director Marcy Darnovsky said engineering the genes we pass on to our children and future generations would be "highly risky, medically unnecessary, and socially fraught".   "The worst-case scenarios are pretty horrific: a genetics arms race between nations or within societies, a world in which affluent parents purchase the latest set of upgrades for their offspring, leading to the emergence of genetic ''haves'' and ''have nots'' ... a world with new forms of inequality, discrimination and conflict," she said.   Advocates claim the technology, CRISPR/Cas9, is the first step in allowing scientists to prevent heritable diseases.   Opponents worry about unknown effects on future generations and the temptation for future parents to pay for genetic enhancements such as greater intelligence or athletic ability.   CRISPR/Cas9 allows scientists to manipulate genes like the "find and replace" function in word processing changes text. Scientists introduce enzymes that bind to a mutated gene, such as one associated with disease, and then replace or repair it.   The technique, if used to alter the DNA of human sperm, eggs, or embryos, holds the promise of eliminating a host of inherited diseases.   But many scientists worry this could produce unknown effects on future generations, since the changes are passed on to offspring.   Scientists note that the gene-editing techniques can also be used to alter the DNA of non-reproductive cells to repair diseased genes. The objections come to so-called "germline editing" in which reproductive cells are modified.   In May, the White House endorsed a ban on germline editing pending further study of the ethical issues.   The latest report was released on the eve of a summit convened by the US National Academy of Sciences and its counterparts from China and the United Kingdom, after a series of events this year that have brought new urgency to the debate.   In March, a group of scientists led by one key developer of the CRISPR technique called for a voluntary research ban on the use of the technology for germline editing, reflecting fears about safety and eugenics.   Shortly after that, a team of Chinese scientists reported carrying out the first experiment to alter the DNA of human embryos.   In the fight for our genes, could we lose what makes us human? asks Ziyaad Bhorat writing for Open Democracy.   There’s more to human beings than biology and physiology—and it shouldn’t be for sale.   In the last 70 years we’ve come a long way towards unraveling the building blocks of human life. The human genome has been identified, sequenced, mapped, decoded, and interfered with. We’ve used this knowledge to clone Dolly the sheep, discover breast cancer-causing genes and create stem cells from our own skin. And now we stand on an exciting precipice: perfecting technologies that allow us to edit our genes with precision.   But as we embark further on the gene revolution and allow corporations and governments to deconstruct human beings down to their most basic parts, we have to question whether we may lose not just some of those parts in the process but something much greater and more important—what it means to be truly human.   Let’s start with the technology. At the 2016 World Economic Forum in Davos, a panel called Humankind and the Machine brought together leading experts in technology, governance, and bioethics to discuss new technologies that are sure to have a major impact on humanity: artificial intelligence, cyber-security, genetics, and space colonization.   When questioned on whether advancements in biotechnology will eventually allow the manufacture of genetically designed human beings, both Jennifer Doudna from the University of California at Berkeley and Nita Farahany from Duke University answered emphatically in the affirmative. By 2030, they said, gene-editing technologies such as CRISPR will allow us to alter human genetics for specific outcomes. We will then be able to engineer the characteristics we choose in our children.   Genetic engineering like this raises a host of issues across different disciplines, but perhaps the most important is the challenge to our own conception of humanity and what it means to be an individual. The German philosopher Friedrich Nietzsche anticipated these questions in 1873 when he wrote, in Schopenhauer As Educator, that “At bottom every man knows well enough that he is a unique being, only once on this earth; and by no extraordinary chance will such a marvelously picturesque piece of diversity in unity as he is, ever be put together a second time.”   Nietzsche joins other existentialist thinkers like Søren Kierkegaard in insisting on humour, irony, parody and all manner of subjectivist tools to champion the uniqueness of individuals against the rationality of collective knowledge and the value of the group. Creativity, belief, and subjectivity are all ways in which our individual self thrives beyond the span of rational intelligence.   But when we start to delve into altering our own biological building blocks artificially via human cloning and engineered enhancements we open up a veritable Pandora’s Box—challenging this individualism by intimately exposing ourselves to society’s political economy and revealing our personal genetic information to more powerful groups. When genetics become the next currency for corporations and governments we risk the commercialization and politicization of who we are on a level far deeper than our skin.   This is not science fiction—it’s already happening. Up until 2013 it was possible for companies in the US to own and exploit patents commercially for genes they had discovered. Over 40 per cent of the human DNA sequence was privatized in this way until the US Supreme Court ruled that naturally occurring genes could not be patented in its judgment on the case of Association for Molecular Pathology et al v Myriad Genetics. However, modifications to any genes in the DNA sequence can still be legally made.   In response to the Supreme Court’s ruling, corporations moved beyond commercializing gene patents through lab testing. They realized that the real value lies in modifications and interventions—developing drugs or techniques to combat genetic conditions or provide useful alterations to our genetic code. It’s estimated that the gene editing market alone will grow by double digits to reach a global value of $3.5 billion by 2019. This does not include the added value that will accrue to the pharmaceuticals industry over time. Consequently, firms are scrambling to capitalize on the growing value of genetic information because the bits and pieces that make us human now have a great deal of commercial importance to others.   For example, 23&Me is a startup backed by GV (formerly Google Ventures) and tech billionaire Yuri Milner which allows consumers to spit into jar at home and send their genome off for ancestry and health testing. While firms like 23&Me seem to have good intentions in terms of fighting genetic conditions such as Parkinson’s Disease, its recent $60 million investment deal with Genentech highlights that the firm’s future is really in the information business. An estimated two-thirds of their consumers have innocuously signed up to have their genes tested and stored in 23&Me’s database.   As Internet companies have already realized, information can be extremely valuable. But when products and services require consumers to provide such intimate information in return for access, genuine consent is undermined. This makes us more vulnerable to data mining, theft and manipulation. As various parts of our DNA are bought, sold, and valued in the marketplace, we enter the age of the quantified self. Will our deeper sense of who we are be cheapened in the process?   These commercial issues raise a fundamental political question: countries like Mexico and India have started a controversial race to protect the genetic integrity of their populations from foreign exploitation. So-called ‘genomic sovereignty’ is already presenting public policymakers with a host of new legal and ethical dilemmas, not least because populations in a country are not necessarily genetically confined within their geographical boundaries. And as global competition among states increases, governments like China are looking to genetics to engineer ‘enhanced’ populations in order to gain an edge over other players.   All of this comes at a cost to society. As researchers like Ruha Benjamin have pointed out, the effect of creating nationalistic identities based on genetic groupings appears to be “a (re)biologization of the nation-state in the branding of [for example] ‘Mexican’ DNA”, which is really a dynamic calibration of the DNA of different populations. Put another way, the state may politicize its population through this process and assign a different value to groups within and outside of its territory. As a result, individual identities may be lost to the identity of the larger group, and we may see the emergence of genetically privileged populations over disadvantaged ones.   Both the commercialization and the politicization of human genetics require us to reconsider how we value our individual diversity and integrity, and what steps we need to take to safeguard these things for the future. Article Two of UNESCO’s 1997 Universal Declaration on the Human Genome and Human Rights explicitly acknowledges that people have an inherent dignity that makes it “imperative not to reduce individuals to their genetic characteristics and to respect their uniqueness and diversity.” While some countries have enacted bioethics legislation to address these challenges, few have gone very far in re-interpreting their constitutional frameworks around the preservation of human dignity and individualism.   Back at Davos, the panel on Humankind and Machine suggested two important ways in which we might safeguard our integrity moving forward. First, education at all levels is crucial: there’s an immediate need to raise awareness levels about the gene revolution and its implications for society.   Second, instead of relying on rigid law-making, deliberative democracy should be used to engage multiple stakeholders in policy-making, including civil society groups like the Forensic Genetics Policy Initiative. An informed population with strong, democratic institutions is going to be more equipped to balance the rights of individuals with society’s need to innovate and create beneficial technologies.   Even with these safeguards in place however, the moral dimensions of individuality may well become less important than the commercial benefits of new gene technologies over time. In rethinking humanity along these lines we must listen to thinkers like Nietzsche and Kierkegaard who insist that there is something more to human beings than our biology and physiology—and it’s not for sale.   http://www.opendemocracy.net/transformation/ziyaad-bhorat/in-fight-for-our-genes-could-we-lose-what-makes-us-human http://bit.ly/1hYP5k8 http://bit.ly/2bPTg2V Visit the related web page
	People Power – What Progress on fighting inequality would look like by Ben Phillips Global Dashboard   Movements overcome injustices not just by bearing witness to the wrongs of the time, but by enabling people to envision a better future.   Martin Luther King described the Dream, the Promised Land, the place towards which people were marching. The Anti-Apartheid movement set out the Freedom Charter. Campaigners for debt cancellation painted a picture of a world where millions more kids would go to school.   In a similar way, groups involved in the emerging and coalescing movement to tackle inequality are going beyond describing why inequality is wrong, and are articulating what progress on fighting inequality would look like.   It’s clear that, for the movement against inequality, change would look like much more than just the use of the movement’s language by those whom the movement is pushing to change course. Activists are pleased that the World Bank and IMF now acknowledge that inequality has gotten out of hand and needs to be tackled. But they note that hasn’t yet noticeably shifted how they actually operate in countries.   The World Bank’s confusion on school fees is still hindering access to free education for all. The IMF still promotes austerity and regressive taxes. Activists are pleased that every government (every single one) just committed at the UN meetings in New York to reduce inequality within and between countries – something that very senior leaders from very powerful countries told many of us they would never ever commit to, just weeks before they did. But they note that the number of governments seriously reducing inequality within countries can be counted on one hand – and say that the commitment to reducing inequality between countries has been undermined by rich countries blocking progress on an international body to tackle tax dodging.   The movement to tackle inequality is not a campaign for nicer language – it’s a struggle for a fairer society, for shared prosperity, for a world where no one has impunity and no one is a nobody. It is a struggle for dignity.   Activists say that progress in the fight against inequality would look like governments across the world learning from, and going further than, the policies introduced by the Lula government in Brazil which redistributed income, increased social protection, increased jobs and salaries for the poor, and increased people’s access to land. Progress would look like access to free, publicly provided, health and education for all; it would look like more jobs, higher minimum wages more strongly enforced, and greater rights at work. It would look like a massive increase in people’s access to land and the enforcement of free prior and informed consent. It would look like progressive taxes, progressively spent, and a clamp down on tax dodging.   It would look like action on climate change that kept temperature rises below 1.5 degrees and ensured the poorest people were compensated for the loss and damage that others have caused. It would look like proper checks on corporate power. Progress in the fight against inequality, activists emphasise, would not just mean a narrowing of the gap between the richest and the rest but also, and indivisibly, greater equality between women and men, and between racial, religious and caste groups.   Most importantly, activists are saying that progress in the fight against inequality would look like a strengthening of the power of ordinary people – more people finding support in community groups and trade unions, a stronger voice for people in decisions that affect them. This is partly because the scale of change entailed can only come about through pressure from below – it is the only way it ever has. And because any change would be either inadequately followed through, or be too easily reversible, unless people power hold governments to account. (As President Obama said in his speech to the UN, “Development is threatened by inequality: the wealthy like to keep things as they are, and have disproportionate influence.”)   But it is also because inequality is ultimately a question of power – and societies are only truly more equal when power is more equal. This is not just a movement to change the rules but also to change who gets to make the rules.   It’s clear that change on this scale will be difficult, that it will take years, that it will meet resistance from the powerful. But it’s also clear that we have reason for hope. Victories are being achieved. We’ve seen glimpses of what is possible, of what progress in the fight against inequality already looks like: the successful halting of the Swedish sugar deal in Tanzania that would have left thousands of farmers landless; the mobilisation of a million farmers in Uganda against taxes on agricultural inputs; the ending of VAT on bread in Zambia; the resignation of the President of Guatemala after protests against corruption; the handing back of land illegally acquired in Cambodia; the expansion of primary education across Africa; the growing challenge to austerity in Europe; the resurgence of activism in the US led by the Black Lives Matter movement; the G77 standing together in Addis for a global tax body; developing countries insisting that compensation for loss and damage be part of the deal on climate change.   It’s clear too that all that change only happened through the building of pressure from below. Last month we saw key civil society leaders commit to this agenda. “Fulfilling our promises to eliminate extreme poverty requires everyone to tackle inequality,” declared Graca Machel, “I welcome this initiative to build a movement for a more equal world where each one of us takes responsibility.” “We will get back down to the ground, back to organising, village by village, street by street,” promised Anti-Apartheid leader Jay Naidoo.   ActionAid’s Adriano Campolina recalled that “every single moment when we defeated power, we did so working together – NGOs, unions, social movements – united”. Oxfam’s Winnie Byanyima declared that “the energy for tackling inequality must be driven by the 99%”. Sharan Burrow, International Trade Union Confederation General Secretary pledged to strengthen partnerships to help organise informal workers and the unemployed. Leaders from faith based groups including Bernd Nilles of CIDSE and John Nduna of ACT Alliance committed to a transformational agenda to challenge inequalities. And Darren Walker of the Ford Foundation committed to tackling the root causes of inequality including by confronting privilege.   The commitment to a people-powered approach from these leaders can help give the growing movement against inequality vital strength and support. But even as I kept pinching myself on hearing from so many leaders in New York the rousing recognition of both the problem, I found myself feeling that I might be in the wrong place in terms of the change we need.   Later, with youth activists who had stopped a demolition of a neighbourhood in Kibera slum in Nairobi, I saw again the power that comes from grassroots mobilisation. Progress in the fight against inequality will not look like lots of international meetings – it will look like lots of local mobilisations, connected across the world.   Kenyan activist Njoki Njehu, who started in grassroots mobilisation with Wangari Maathai, and then went on lead movements challenging the World Bank in DC, talked recently with a group of campaigners about why she returned from DC to Kenya and went back to organising at the grassroots. “DC can be a great place to fight for change but you can also get lost in circles. You can have a campaign with great reports and media but will change no lives, until you start to organise and mobilise people. Don’t get lost in influencing peddling. Power for change always comes from below.”   What will progress in the fight against inequality look like? It will look like people power.   * Ben Phillips is Director of Policy, Research, Advocacy and Campaigns, ActionAid International. Visit the related web page
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