Who Owns Science John Sulston Institute for Science

Who Owns Science? John Sulston Institute for Science Ethics and Innovation, University of Manchester www. isei. manchester. ac. uk

Science - to understand - to effect all things possible - to do good

THE HUMAN SAGA Our achievement consciousness, communication mythological social order divine engineering powerful cosmology on a minor planet evolution one life form fundamental physics > Our self assessment in a vast universe molecular biology with a material body the brain and comprehensible mind exploration on a marvellous journey <

Discovery Public interest Application

Manchester manifesto towards a consensus on problems and solutions in IP and innovation www. isei. manchester. ac. uk/The. Manchester. Manifesto. pdf

Principles • Provision of public good • Just and equitable balancing of interests • Facilitating progress of science and innovation • Increasing access to fruits of research – information and products • Addressing welfare and resource inequities – locally and globally • Increasing trust in relationships – scientists, innovators, corporations, public, nations

CIPA’s comments Manchester Manifesto …. “ill-informed and misleading” “IP rights do not ‘have the tendency to stifle access to knowledge and the free exchange of ideas that is essential to science’” “Patents can't be used to prevent a product coming onto the market - if demand for a product is not met on ‘reasonable terms’ then, subject to certain safeguards, anyone can apply to the IPO for a compulsory licence under the patent” “Patents do not prevent universities from carrying out research - acts done for ‘experimental purposes’ don't infringe” “Patents enable research bodies like Manchester University to earn a fair return from technical applications of their work, so that money can be ploughed back into further research” “. . . misleading claims about human genes, stating ‘some 20 per cent of individual human genes have been patented already or have been filed for patenting. ’”

Requirement for secrecy “By far the most common mistake made by people new to the world of patents is to reveal their invention too early. ” UKIPO “If you think your invention is potentially patentable it is essential that the details of the invention are kept secret until the application for the patent is made. ” University of Manchester

Proprietary database R R human genome $$R

Public database R R human genome $$R

not-for-profit revenue discovery knowledge understanding for-profit revenue application culture good harm

not-for-profit revenue discovery knowledge understanding for-profit revenue application culture good harm

not-for-profit revenue discovery knowledge understanding for-profit revenue application culture good harm

core funding vulnerable to market shifts not-for-profit revenue discovery monopolies block follow-on innovation knowledge lobbying marketing profit understanding for-profit revenue high prices cause inequity good application mostly for-profit culture external regulation harm needed We are all shareholders

Total number of new drugs developed from 1975 -2004: 1, 556 Tropical diseases: 18 TB: 3 1. 3% Tropical diseases and tuberculosis account for 12% of the global disease burden but only 1. 3% of new drugs developed. Source: Chirac P, Torreele E. Lancet. 2006 May 12; 1560 -1561. The drugs people use must be safe, affordable and available. Medicines are not everything, but without them little can be done. Source: Lee Jong-Wook, WHO Director-General, April 2006.

Marketing excesses Lobbying Physician incentives Patient groups Adversarial testing Ghost publication Disease mongering

not-for-profit revenue discovery knowledge understanding for-profit revenue application culture good harm

Alternative systems • Open access models • Prize fund models • Compulsory licensing • Patent pools • Remuneration-based rights • Differential pricing • Voluntary licensing • Patent waivers • Bulk purchasing • Price controls

Moving on in global health Public-private partnerships and not-for-profits charitable and government funding Global treaties WHO prize funds Alternative licensing models patent pools - UNITAID, GSK GPL, Creative Commons, Science Commons Civil society NGOs, Universities

Universities Allied for Essential Medicines Student coalition - 50 major institutions - USA, Canada, UK, Germany Aims - Equitable transfer agreements - Research to address needs of the majority - Dissemination of knowledge www. essentialmedicine. org

Trails of discovery gene diagnosis new function therapy

Myriad and breast cancer Myriad Genetics controls US patents on the BRCA 1 and BRCA 2 human genes, which are associated with breast and ovarian cancer. The company charges over $3000 to test a women for susceptibility for familial breast cancer. The patents have now been ruled invalid

The delivery of health Infrastructure - water, food, housing, sewage Medicines and treatment: 1) Social system - rationed by cost/benefit eg EU 2) Market system - rationed by ability to pay eg US What will the global health service look like?

Sources of trust • • • benefit sharing access to knowledge equitable trade rules multinational agreements reversal of brain drain balancing openness with opportunity - globalisation of justice . .

. . avoiding the tragedy of the nations . . leading to a sustainable world

ACKNOWLEDGEMENTS Thanks to: Medical Research Council Wellcome Trust Oxfam Médecins Sans Frontières Human Genetics Commission ICSU - Committee for Freedom and Responsibility in Science University of Manchester – institute for Science Ethics and Innovation … but the opinions stated are my own

The University’s Role The justification for a great university does not lie solely in being a profitable business - though that is a means to its ends Nor yet solely in education - though that is a vital service to future generations But above all in the pursuit of independent thought and research, in the discovery of unimagined knowledge, and in being a trusted source of wisdom

Suggestions for further work • How much science is for the “public good”? • Ways of protecting those who don’t want protection • Ways of increasing the bar for granting of patents • Explore role of competition law • Investigate systems of just pricing • Investigate incentive effects • Normative analysis of “public/private” dichotomy • Ways of building capacity to support participation • Regulation of science and innovation • An ethical framework for innovation

Conservation of vertebrate Promoter 1 a sequences T. Green and B. Gottgens

INTERNATIONAL AGREEMENT ON DATA RELEASE “All human genomic sequence information should be freely available and in the public domain in order to encourage research and development and to maximise its benefit to society. ” The Bermuda Statement, February 1996 Assemblies of 1 -2 kb are deposited in public database (Gen. Bank, EBI) every 24 hours No patents are filed

ICSU - CFRS ICSU (International Council for Science): 147 members in 137 countries Each is principal scientific academy or national research council CFRS (Committee on Freedom and Responsibility in the conduct of Science) works on: - the rights of scientists to freely associate and freely pursue science - the responsibilities incumbent in these rights Recent statements on: - the Israel-Palestine conflict - integrity of the scientific record - publication practices, role of peer review in research assessment

Primary objectives Industry: to profit Science: to discover Corporate NGOs Democratic How responsibility? media government? to balance? Medicine: to help patients We are all shareholders

Knowledge Acquire freely - beneficial to humanity - an end in itself Use wisely - personally - collectively - institutionally

Examples of working networks • • • science meetings and publications public biological databases open access publishing free software internet

Examples of problematic networks • • • geographical maps meteorological data avian flu pharmaceuticals European database directive

Sources of problems • • • personal attribution short term profit motive exclusive patent rights as revenue source government perceptions competition for international trade inequality unforeseen consequences of free market trust in “corporate responsibility” digital rights management