Ethical, Legal, Social Issues (ELSI) in Engineering Describe some …

Some Course Goals Enhance awareness of ELS issues Provide frames of reference for thinking about them Philosophical theories Political schools of thought Social-Economic analyses Legal approaches Focus on a few concrete examples in some detail Genetics and “personalized” medicine Cancer screening and biologic drug treatment Government regulation, patent issues Read some primary sources in different fields science journals, economics, legal decisions

Format Reading and class discussion (25%) divide and conquer – split reading among students, teach classmates what you learn Homework questions on reading (25%) Midterm (25%) Student project (25%) group or individual paper or oral presentation consider empirical approach rather than descriptive report

Will try to mix technical considerations with ethical, legal, social issues – you are engineers! emphasis on social evaluation of new technology Not just about ethics – consideration of social and legal issues distinguish this course from Phil 135 Hard to strike a balance that will please everyone, providing feedback as we go along will adapt the class to better suit you: anonymous feedback: Blackboard->Discussions-> Feedback->Thread, check anonymous

Books: will read a few chapters from several books – you may be able to borrow and xerox rather than buy Biomedical Engineering for Global Health Rebecca Richards-Kortum, Cambridge Univ. Press ISBN  $75 Justice – Michael Sandel Language of Life – Francis Collins To extent possible, readings will be posted on Blackboard

Some other sources of information: Wikipedia – definitions of terms Company websites (23andMe.com) Journals – Nature, Science HHS Agency for Healthcare Research and Quality JHU Center on Genetics and Public Policy Popular press - pay attention to what seems relevant Organization that evaluates health news articles: Share new sources you find by posting on Blackboard/ Discussion Board

Topics Framework Ethical/Political Theories Escalating health care costs how is this an ethical, social problem complex role of technology & Biomed. Eng. Genetic testing – “personalized medicine” technology, promise, potential consequences for health insurance, privacy, costs Patents, balancing social benefits and harms should genes be patentable? Cancer screening – when is it useful, balancing benefits, harms and costs

More topics Cancer treatment – ethical, economic dilemmas Government regulation (FDA), regulation in fields of rapid technological innovation Stem cell research controversies Ethical issues associated with research – scientific integrity, informed consent social consequences of bad judgments Privacy and the internet

Ethical theories – framework for E in ELSI; how can we relate framework theories to real problems? Preview of next week’s reading (Sandel Justice) The Runaway Trolley

Ethical theories – framework for E in ELSI; how can we relate framework theories to real problems? Utilitarianism (Bentham, Mills) – greatest good for greatest # morality determined by consequences of acts problems: how to measure utility, disutility ? lives saved, quality-adjusted life-years, harms… single measure (e.g. $) sometimes inappropriate benefit to majority can trump minority rights close to economics example where it seems useful: screening technology with limited budget, health care dollars should be spent to maximize # life-years saved (but should “quality” of life years be taken into account, is this problemmatic….?)

Kant – 1700’s, era of American and Fr. Revolutions people are worthy of respect because they are capable of reason, have autonomy to choose moral principles can be discovered by reason (don’t need religious justification) “categorical” (“absolute, unqualified”) imperative: never use people as means to some end (your own pleasure, financial gain) act according to rules you would be comfortable to generalize - e.g. Don’t mislead others Anti-Utilitarian: its not the consequences but the motive that makes an act moral (“deontological”) example: those who view embryos as living beings may object to stem cell research no matter how much it might help others

Social justice (Rawls, 1970s): concerned with how rewards of society (wealth, power, etc) should be distributed Can’t control unequal distribution of factors that affect outcomes (natural abilities, inherited wealth, values instilled by family, educational opportunities) Forced equality would hurt overall welfare A fair distribution is that which comes from social rules (“contract”) you could agree to before knowing accidents of your birth (“veil of ignorance”) Unequal benefits are acceptable (even tho’ “unearned”) so long as they benefit least advantaged (“diff. prin.”) Example: do you want “right” to health insurance independent of genetic pre-disposition?

Libertarianism – maximize personal freedom; minimize gov’t controls; only role of government is to prevent crime, etc.; free market is best determinant of distribution of goods Example – limit FDA regulation, government intrusion into beginning and end of life decisions problem – “free markets” aren’t always fair, given unequal information, bargaining power, wealth “Communitarianism” – government has legitimate role in promoting social welfare, e.g. regulating markets. Examples: patent policy: allow temporary monopoly, despite cost to consumer, to stimulate innovation; government health insurance may be required by law

What connections can you make? Issues we will considerEthical theories Genetic testingUtilitarianism is direct-to-consumer ok?Kant – value individ. should FDA regulate it?Libertarianism Rawls – fair distrib. Cancer screeningCommunitarianism who should be covered? Stem cells is it ok to use embryos that parents will not implant? do potential medical benefits affect the decision?