Defining Nursing

welcome and good evening.this is the values-based lecture that nhshas hosted for many years. and i am dr. laura anderko.i'm holding the endowed chair in values-based health care,and i'm also the co-chair of the school's committeeon mission and values. i'd like to also introduce myco-chair, dr. jason ormsby. it's the first year forus to have this committee, and i'll tell you a littlebit about it in a minute. this year we are hostingour values-based lecture,

which is not onlyco-sponsored by the committee on mission and values, but alsoon the student-led minority health initiative council.and i'd like those students to stand up that are here today.they have been helping us for the last couple years.thank you. [applause]and as i mentioned, the committeeon mission and values-- this is our first yearas a standing committee. and i'd like to recognize themembers that are here tonight.

please stand.i see bill. thank you.[applause] there are two people fromthe committee that i really need to thank.the first is dr. carol taylor who isn't herebecause she's giving her own keynote on ethics.but she personally invited dr. grady tonight,and i'm very grateful that she wasable to make that connection. and bill cessato.wave, bill.

bill is the brains behind this.and if you've ever done one of these, there's a lot of detail.and he has organized and coordinated it,and i cannot thank him enough. thanks, bill.[applause] one of the things,besides this event, that the committeeon mission and values has done in its short periodof time since september is also award three healthequity student scholarships. these students will be workingwith the region three health

equity council.and it's funded through the center for health equity,as well as-- we're currently recruiting,and we'll be reviewing and selecting a graduate intern.this internship will be the project coordinatorwho will be in charge of the region three health equitycouncil. we just found outa couple weeks ago we got funding from theoffice of minority health to fund this.so if there's any graduate

students out therethat are interested, please be sure to see me.so on behalf of dina gucci, please stand.come on. we'd like to welcome you,and our distinguished alumni and keynote speaker,dr. christine grady. we're really thrilledat the large turnout. we had over 160 rsvpsfrom across the university and our community.and for the very first time, we aredelighted to be joined

through live webcast.hello to everyone, students and faculty,in our online graduate nursing program,from as close as maryland, and as far away as hawaii.maybe we could bring some of that weather over here.that would be nice. those of you that know nhs knowwe have a very long history. we are actually celebrating110 years of existence, and our commitmentto our core values. there's a little quiz laterwith dr. grady's presentation,

but there are flyers thatlist our values on your chair. tonight promises to be aninformative and inspirational event that will focuson one of our four defining values, thevalue of the common good. our keynote speakertonight, dr. grady, who is chief of the nihclinical centers department of bioethics, will be presentingvalue of the common good-- challenges and opportunities.before she begins, i'd like to invitejuan dent, a junior

international healthmajor at nhs, to the podium to providesome information about dr. grady's career.juan is co-chair of the minority health initiative council.juan? [applause]thank you, dr. anderko, for that introduction.i welcome everyone to this year's values-based lecture.and a special thanks to dr. christine grady,who i will be introducing. so dr. grady receiveda bachelor's degree

in nursing and biology from ourvery own georgetown university, went on to receive a master'sdegree in community health nursing from bostoncollege, and came back to georgetown university for adoctoral degree in philosophy and bioethics.she is currently a member of president obama's commissionfor the study of bioethical issues,and a senior research fellow at the kennedyinstitute of ethics. she has also beenselected as a fellow

of both the american academyof nursing and the hastings center.she's a member of an institutional reviewboard for the national institutes of diabetesand digestive and kidney diseases,as well as the national instituteof arthritis and musculoskeletal and skin diseases.she serves on three editorial boards of professional journalsin bioethics and nursing, and has lectured widelyat national and

international conferences,professional societies, universities, and health careinstitutions on ethical issues in clinical researchand clinical care. dr. christine grady is a currentchief of the nih clinical center department of bioethics.her current research focuses on research subject recruitment,incentives, vulnerability, and international research ethics.dr. grady has written extensivelyin books and scholarly journals in the topicin bioethics, hiv

disease, and nursing.if you haven't already, i suggestthat you take a look at her publications.please join me in welcoming dr. christine grady.[applause] thank you very much.and thank you for coming out in this spring evening.it feels like it's january. thank you to the dean.thank you to dr. anderko and her esteemed faculty.thank you to bill for all the instructions.thank you to juan

for the introduction.it's a pleasure to be here. so i'm going to talk about thevalue of the common good, some of the challengesand opportunities. i have to start by saying--first i have to figure out how to use this-- thatalthough i work at the nih, the views are my owntonight, nobody else's. and i don't have any financialconflicts of interest. and what i hope to do,actually, is talk to you a little bit aboutwhat it means,

what the value of thecommon good might mean. but a lot of whati'm going to do is talk about someof my own experiences and my own work that havestruggled with-- i guess it's the right way to thinkabout it-- how to protect the value of the common good.and so i'm going to weave a lot of personal storiesand a lot of examples from my own work into this process.i want to, first, applaud the school of nursing and healthstudies for having a

mission statement thathas a value of reflection in it. so i thought it was reallyinteresting to say, "continue its long tradition of preparingmorally reflective health care leaders and scholars whostrive to improve the health and well being of allpeople, with sensitivity to cultural differencesand issues of justice." so i like to thinkof myself as one of these morally reflective.i found some old pictures of me looking morally reflective.i have to say, as

you heard already,i was a student at the school of nursing decades ago,and a student in the graduate school in philosophyin the last century. the last pictureis really where i'm being morally reflective today.but i think it is very exciting that there is a values lecture,and that there's a values curriculum.and so i was going to ask, how many of youare students in the school of nursing and health studies?ok.

and how many of you couldname the four values that guide your school, withoutlooking at the cheat? no hands raised.you can pick up the sheet. well, as you canlook at the paper, there are thesefour values, which i think are quiteinterestingly chosen. excellence, social justice,respect and diversity, and the value ofthe common good. all really important values.all ones that i actually

believe i hold dearly in my lifeand hope to exemplify in my work.i thought about this as i was thinking about this lecture,whether or not this is a bug i caughtwhen i was at georgetown. maybe.it also might have been part of whatattracted me to georgetown. so i think there's a clearlyintegral values-laden philosophy andcurriculum at georgetown. so, again, i apply that.what i'm going to

do now, though,is turn to the last one. because that's the one that iwanted to talk about tonight. the value of the common good.before i do, i want to say, the wayi think about the expression of core valuesis that it does at least two important things.one is that it expresses the fundamental beliefsand commitments of an organization.and so, those values that are listed for your schoolexpress the commitment

that your schoolhas to certain values and certain ideas about the waythe world should work, and the way we, as studentsof that school, should work in the world.i think the other thing that valuesdo is guide us in behavior and action.i'm going to try to think about these two aspects of whatvalues do, and the value of the common good does,in separate terms. so the first thing i thinkthat's interesting is

to think about, what do wemean by the common good? what is the valueof the common good? one of the things that i readin preparation for this said, valuing the common good issort of like mom and apple pie. who would ever say they'reagainst the common good? nobody.but if you ask them, what do they mean by it,they probably have very different understandingsof what that exactly means, not only in the abstract,but in terms of how

they live their life,or how they practice their profession.i also think it's interesting to ask the question,what kinds of beliefs and commitments does it express?what does it mean for the school of nursing and health studiesto say they have a value of the common good?what does that mean in terms of whatis taught, in terms of the way it's taught,in terms of the kinds of commitments and philosophiesthat students develop in

the process of learningat the school of nursing and health studies?and then the obvious next questionis, how does it, then, serve to guide action and behavior?so this is a busy slide. it came from oneparticular article that i found, which i thoughtwas quite interesting. it has a very specificfocus, the article, but this paragraph doesn't.he says, "the common good is an idea thatcontains a lot of expectations,

and both positive and negativeassociations of its usefulness. its centrality in politicaland philosophical theory is well established, butalso roundly criticized. there's noconsensus," he claims, "on the scope orlimits of the concept, nor often is it even clearwhat type of phenomenon it is." but then he goes on to say,"nonetheless, disagreement or vagueness doesn't meanthat we don't value it. the disagreement or vaguenessregarding a certain concept

is, in itself, no reasonfor dismissing it. indeed, a few thousandyears of philosophy have demonstrated anecessity for the concept of the common good, despiterecurrent misgivings about its proper definition,scope, and limits." and i think this isimportant, because i think probablyeverybody in this room has a sense of what theythink the common good is. but if we quizzed you,which i'm not going to do,

i suspect there would bequite a diversity in terms of understanding what it means.it does, however, have a long history, certainlya long philosophical history. there are writings of plato,and socrates, even in aristotle, which, while they don't use theexact terminology common good, they certainly have thephilosophy of the common good, and talk about theimportance of the common good for political reasonsand cohesion of society. there's also a long traditionof valuing common good

in christian thought,and especially in roman catholicism.and writings as far back as the epistle of barnabas,but also thomas aquinas and many popeshave written about the value of the common good.there's a lot of writing about the state rolein protecting the common good. the state has a role in creatingconditions of social life which make the commongood flourish, or which allow individual rightsand opportunities to shape

one's life in the settingof, and the cohesion with, the common good.and there are volumes of things written about common goodas a goal of democracy, and as a goal of socialism.but slightly different meanings in those two cases.so this is a roughshod tour of the various waysthat people think about the common good.and i introduce it to you, because ithink it's worth thinking through.what do you mean

by the common good?and how does it express a philosophythat you might believe? and how does it guideaction that you might have? i think for healthand health care, most people have some kind ofnotion like this when they say, the value of the common good.it somehow focus on the whole, on the good of society,on the good of populations, both current populationsand future populations, and the goodfrom the perspective of health.

so this is, again,a pretty vague idea, but i think this isthe kind of thing that most people thinkabout when they think about the common good in thecontext of health and health care.there is a lot of writing about the commongood in public health literature,and in public health bioethics. and this is a quote from theencyclopedia of bioethics, which says, "the commongood in public health

means the good of individualstaken together as a group, as communities, or in terms ofaggregate health and safety. this aggregate health, expressedas so many thousands of lives saved, is the object oforganized government and--" it says "or," but i say"and community effort." and that's what we think aboutin terms of public health. so i want to suggestthat when we think about that vague terminologyin thinking about what the common good might be, thatthere are two main ways that it

comes up as guides to action,or as a value that helps us think about theright way to act in the context of health care.and the first is making choices among different social goals.so, sometimes people call this allocation.i mean, it is allocation, but it's not only allocation.but it's making choices among important goals thatare good for society that all contribute in some wayto the common good. so allocating, for example,between education, health care,

and infrastructure.that's a way that thinking about the value of the common goodis central to that debate, and deliberation, and decisionabout how we make those kinds of choices.i think we also can see how it's relevant in allocating choiceswithin health care. so how do we decide-- itforms the basis of some of our decisions, or it forms apart of some of our decisions, about how much money dowe give to primary care versus specialty care?or research versus

clinical care,or prevention versus treatment. you can go on and on.perhaps, even if i'm a practicing nurse in a hospital,how much time i give to this patient versus that patient,or the whole group of patients that i'm responsible for.i think the other way that it comes up, and in my life,i would say, more commonly than the second way--but i'm going to talk about the first way, too--this idea of reconciling tensions between effortsin health care that promote the

common good as we understandit, and that tension with protectingthe individual interests and goods that might be at riskor compromised if too much attention goesto promoting the common good. so i want to now tella couple stories. the first one is about--this is a picture that i found online whichis not exactly right but is pretty darn closeto what i remember. one of my jobs as anurse, a long time ago,

was working in a clinicalresearch unit, one of the nih funded gcrcs, in boston, attufts new england medical center.the patients that we took care ofwere mostly hematology oncology patients and endocrinepatients. and this was enough yearsago that bone marrow transplantation was avery new phenomenon. it was an experimentalphenomenon. it was being tested rigorouslyin this environment.

and so this is what wecalled then a life island. and my job was, asa nurse, to take care of people who wereinside this life island. and the nurses were outside.you can sort of see the sleeves hanging on the side.everything that we did for patientswas through those sleeves. everything that wentinside the life island had to be double sterilized.so there was no human contact that the people on the insidehad with those of

us on the outside.bone marrow transplantation can be today, but in those days,was very intense, in terms of takingcare of people who had gone through this procedure.and so, on any given shift, for one patient,there were at least two nurses assigned full timeto the one patient. and it was an interesting,challenging experience. we got very attached, as youmight imagine, to the patients that we worked sointensely with.

and it raised so manyquestions in my mind. one of them was,how can we continue to expand so manyresources on this process, for these individuals,when-- this was in boston. i knew, down thestreet, there were people who were notgetting prenatal care. and it used to bother me wheni thought about those things. what's the right way toexpend resources, both mine and the resources of moneyand other people's energy?

it also got me thinking aboutthe context of research. this was my firstresearch experience. and, as i said, we gotvery close to patients, very attached torooting for them in ways that i'm sure manyof you can relate to. and every singleone of the patients that i took care of inthis life island died. every one of them.and yet, the bone marrow transplant experimentwas successful.

the bone marrowtook, so to speak. this was the languagethat people used. the bone marrow took, butpeople died from infection, from graft versus host disease,from the things they still die from today.but in those days, the intensity of the conditioning regimentwas much worse. so this was an experience thathas always stuck in my mind as something thatmade me struggle with the tension between choicesthat we make about resources,

choices about how we prioritizeindividuals versus groups, and things like that.i had an experience a few years after that.i worked for project hope, and i spent a couple of yearsin northeast brazil. northeast brazil was then, andstill is, a beautiful place. i lived on the coast.if you look at a map, you know the elbowthat sticks out into the water? we were right aboutat that elbow, in a city called maceioin the state of alagoas.

and i worked at a federaluniversity hospital. and it was anincredible experience for many, many reasons.i could talk all day about that experience.but the one i want to highlight for this evening's talkis the one about triaging. and we think of triagingin military context, and in disasters,and things like that. but what i felt likei did in this job, almost every day, was somethingalmost exactly like triaging

when i would come to thehospital in the morning, there would be at least 100people waiting at the door to get in to see a doctor, someof whom who had traveled days on a bus to get there.and the doctors-- some of them. some of them were wonderful.some of them, though, were doing this because they had to.it was a federal university that they had to pay back.what they really wanted to do with their private practice.and so they would come in-- and therewas one pediatrician in

particular who was, i think,the most egregious-- there'd be 100 kids waiting to be seen,and he'd say, i'll see 10. he'd pick 10.so, somehow, we had to make these decisionsbetween this group of kids that were, mostof them, in very dire need of care.how many of them we could handle,take care of, without seeing the pediatrician?how many really had to see the pediatrician, and howmany could wait

until the next day?again, it was that kind of experiencethat made me struggle with this idea of making choices.so i want to now turn to the tensionthat i mentioned between individual interestsand the common good. it's interesting to me that,when you read the literature, and in antiquity-- although thistension's always been there-- the literature suggeststhe common good always won. if there was a tension, whatwas good for the community

and what was good for thewhole was always the trump. and yet, it also wasassumed that, in most cases, there really was noconflict, that what was good for the individual was the sameas what was good for the whole. but i think today-- and as oldas i am, i wasn't alive then-- but today we have a situationwhere there's some, i think, obvious tensions.so there are definitely intereststhat people have that are at oddswith other people's interests.

admission to graduateschool, for example. if you're trying toget in, your interest is getting in, which meanssomebody else won't get in. you understand thatat the beginning. in many cases, our contradictoryinterests are justifiable. i was thinking about, as i wasdriving down here, my interest in getting here on a cold night,where public transportation isn't so great tothis neighborhood. and the trade off there withadding to the carbon footprint.

there also arelegitimate interests that don't necessarily servethe common good and, i think, lots of them.we have interests in privacy, for example,which sometimes come up against whatmight be best for the common good.we have interests in owning property, another thing thatcomes up against what might be the best for the common good.so there's a lot of ways that interests of individualscome into conflict, or in

tension, with what we thinkis probably best for the common good.and yet, in this society, and in many societiesaround the world, there is a well-established emphasison individual rights and individual interests.we celebrate them in this country.we celebrate the individual as very important.so oftentimes, these tensions, which are sometimes difficult,are-- it's the common good pittedagainst these

individual interests.and we say, the individual interests are very important,and it's only when the common good can--when you can make a case that the individual interests arenot sacrificed, and the common good is benefited,then you can somehow deal with both of them.and we have lots of examples. public health, i'vealready mentioned. vaccination, i think,is another one. clinical research.bio banking, something

that i'm spendingmy time right now thinking about.rationing. there are many others,but these are just a few familiar, i think,ways in which this comes up. so here's one that iencountered in my life. so after brazil, i,couple of stops later, ended up at the nih and startedworking there in the early '80s when hiv came.and took care of people who had hiv, but alsohad the opportunity

to teach about it,teach nurses and other health care workers,and also do some research. but there are many tensionswithin the hiv epidemic today, still, thatraise this conflict between individual interestsand rights, and the common good. one of the early ones that stillis a problem for some people is the issue of confidentiality.when somebody is hiv infected, they have a rightto some privacy about that, and a rightto some confidentiality

about that.but there are circumstances under whichis that right might be justifiably infringed.so for example, if somebody is putting an identified partnerat risk of infection, most peopleconclude that the partner has some rights, too.and therefore, you can override the rightsof the individual who is infectedand inform the partner. there are legal issuesin that regard, as well.

but in the unitedstates now, the laws now are mostly discretionof the health care provider. so the health careprovider-- mostly a physician-- has thediscretion to inform partners. but there's lots ofinteresting questions about the protectionof confidentiality and the rights of theindividuals in the common good. i used to get challengedwith questions from people-- what do you do about anindividual who knowingly

goes out and hassex with others? can we legitimately curtailthat person in some way? and that's a complicated one.there are certainly states that have laws that allow that.but i think you have to be sure that the person isacting criminally or negligently.you have to be sure that the person has all the informationthat they should have in order to know what kind of dangerthey're putting others in. you have to be sure thatthe public, the others,

are educated.there are a lot of details in termsof reconciling that balance. another one that comesup more recently, actually, is theissue of testing. so it's related toconfidentiality, of course. but the recommendationin the last several years has been to test everyonebetween the age of 13 and 64 in health care settings, inan, originally, opt-out kind of way.in other words, rather than

stringent, opt-in, written,informed consent, informing people and saying youhave the right to opt out, but otherwise we'regoing to test you. and a lot of the argument forthat, in some people's minds, is protection of othersfor the common good. but the only reason, ithink, in our country, that shift was made--in other words, to allow for opt-outtesting-- was when the testing ledto potential benefit

to the individual,him or herself. the tested individual.so it was a way in which public policy followeda reconciliation of the tension between protectingthe common good, or the public, and protecting the rightsand interests, in this case, of the person who will benefitfrom being tested and treated. so you all know that, inaddition to being a nurse, i'm a bioethicist.so it's interesting to think about how bioethicsthinks about the common good.

again, this is something wecould talk about for days. but i think onething that's true is that bioethicsstarted with a very clear focus on individuals.and bioethics, as a profession or discipline,has been criticized sometimes as being too focusedon individuals and individual rights.in the early '90s, there was a surgeof what people called communitarian bioethics, whichwas really bringing back focus

on the common good in a veryexplicit way. as one writer wrote, "aneo-aristotelian philosophy, focused on the commongood and the relationship of a good citizen and thegood of the community." and "communitarianbioethicists stress an orientation towardsethical questions that relies on a shared,common understanding, and a shared notionof the good life, and what's good for thecommunity as a whole."

i actually thinkthat bioethics is more rich than both of those.i think that, sure, we do focus sometimes,in certain circumstances-- and protect,i think sometimes vehemently-- the interests, and rights,and goods of individuals. i think bioethicists also docare about the common good and focus on what's goodfor the community, what's good for the whole,both current and future. and i think thatthere's a lot of nuance

in terms of how thosethings are brought together. and so, when ithought about it, i thought, bioethics--you can tell i'm biased, but i like bioethics-- andi think part of what it is, is balancing a rich diversityof interests and perspectives. so i have a little cartoonthat shows you balancing. i think it's more complicatedthan just a scale, the individual interest andthe community interest here. i think it's a lot ofinterests that we're

juggling in the air--individuals, communities, global communities, privateinterests, public interests, family interests.you could go on and on. and i think that'swhat makes it exciting for me to be in thefield of bioethics. so now i'm going toturn to some of my work and talk about how my worklies at the intersection of this tension betweenindividual interests and the common good.most of what i've done

since i've been at the nih,in bioethics, has focused on the ethics of clinical research,the ethics and doing research with human beings.and it's the perfect example, in many respects, of this tension.because the reason to do clinical researchis to develop knowledge for the common good,for groups of people that have certain diseases,for patients today and tomorrow that will have these diseases.so it's really a group-focused activity.and yet, all of

the constraints--if that's the right way to think about it-- allof the constraints, in terms of how we do researchwith human beings, are born out of protectingthe interests, and rights, and welfare of those human beingswho are partners in the exercise.so it's really interesting that this brings them together.and most of my work, as you heard from the introduction,focuses on vulnerability of participantsin clinical research,

recruitment, informed consent,how people benefit, and how they perceived benefits.so lots of this individual interests stuff.and yet, i am very pro-research and verymuch believe that the first and most importantethical criteria for research is that researchhas to answer a question that's good for the common good, thathas value. and so it's interesting howthose two come together. one of the things thati've worked on a little bit

is the ethics ofvaccine research. and it actually was the topicfor my doctoral dissertation. it was the ethicsof vaccine research. and i think there's somany interesting ways that this tension comes togetherin the context of vaccines, both in developing vaccines,in deploying vaccines, and in thinking aboutthe challenges of vaccine refusals-- people whorefused to get vaccinated. so in terms ofdeveloping vaccines,

we think of a clinical trial.in the context of most people who get the experimental agent,or the agent that's being tested,we hope they will benefit. that's the way that we thinkabout clinical research, even though that's not the goal.that's the hope, that people will get some benefit outof it. and we'll see whethersomething works by the fact that some people benefit.well, vaccine research is very complicated in that regard.because depending on

what you're testinga vaccine for-- my dissertation was on hiv vaccine.so think about a cohort of people that are at risk of hiv.a risk in a community that has a lot of hiv is less than 5%.so if you have two groups of people,half are getting vaccinated and half are getting placebo,it's only 5% of the group that's going to get infected anyway.and the rest of the people are taking the risk,so to speak, in order to help answerthe very important question

for their communityand for the world. and so you cansee how protecting the interests ofthose individuals is critical-- knowing thatthe benefit that they're going to get for participatingis not individual. it's communal.i think, in deploying vaccines, wehave some of the same tension. there are people who getterrible reactions to vaccines. but we want there to be aswide a coverage as possible,

because it protects everybodyif most people get vaccinated. and so there is atension between what might be good forthe individual, and what's goodfor the community, or society, or the common good.and i think this comes up in this reversalway when people refuse. there's certainlya lot of reason to respect individual beliefs,and individual conscientious objection, ifthat's the right way

to think about it,to being vaccinated. but there is a cost.at some point, if enough people refuse to be vaccinated,the common good is jeopardized, because herd immunityis reduced, et cetera. and so there is this tensionthat's not irresolvable. i think we need to beable to understand reasons that people refuse to bevaccinated, work with them, educate them.but there's some things in societythat they may not be able

to do, if they're notgoing to be vaccinated. so that's a great example,i think, of this tension. i know that juan, anyway,was an international student. i know there were someinternational students, so i thought i would sayjust a word about research in the internationalcontext, because i think it takes on someother dimensions of this issue inan interesting way. one is that many peoplethink about the ethics

of internationalresearch as related to the goals of theparticular research. so if you're doing a researchstudy in a certain village in a certain country inafrica, and the purpose of it is to find something that'sgoing to help that community, that is much morepalatable to most people than if you're apharmaceutical company that's going to the village inafrica because it's cheaper. it's cheaper to do it there.there's less regulatory

burden, or both.so goals matter. cultural values matter,because not every society has the same emphasis onindividualism as we do. and so this balance betweenprotecting individual rights and interests in thecontext of research, and doing what's good forthe community-- the seesaw is a little differentin some places than it is in the united states.even in western europe, which is more like usthan some places in

the world, there'sa much greater appreciation of the value of solidarity.and i think people participate in research more often,for that reason, than they do in the united states.and you can see it taking on different flavorsand in very many parts of the world.i think there's also an interestingly correspondent--if that's the right word-- concern about exploitation,that the more we invite people in vulnerable contextsto take on activities that

are for the common good,the more we are taking advantage of them,in possibly an exploitative way. and so, the concerns aboutinternational research raise the specter ofexploitation very loudly. and, of course,background conditions are very different as well.now, i have had the opportunity to be part of the president'scommission on the study of bioethical issues.and we've done a bunch of very interesting projects.but i'm just going

to mention, briefly,the last two, because i think both of themalso center on this tension between the common good andprivate goods, or individual interests and goods.this was a study we, i think, finished inoctober or november of 2012-- so not that longago-- privacy and progress. and it was a study that lookedat whole genome sequencing. so whole genomesequencing is this new way of sequencing people'sgenes, rapidly ramping up.

i was at a lecture,actually today, on whole genome sequencing.and there are groups of people who have joined together,and are getting their genomes sequenced,and then posting it online, or sharing it with each other,and sharing it with commercial entities,and sharing it with anybody that wants it,basically, for the purpose of the common good.there is a sense that these kind of data,genome sequencing

of individuals,only is useful for understanding diseases and varianceof the genome that make people susceptible to disease--it's only useful when it's shared,when it's combined with other people's genomes,and with phenotype data as well. so you've got lots ofdata, needs to be shared and put together inthese huge databases. and that's the way it's goingto be useful for understanding diseases, forfinding treatments,

for findingpreventions, et cetera. at the same time, themore that happens, the more there are potentialrisks to individual privacy. and so, this is a veryreal and very present day concern that wehave to deal with. the president's commission--what we ended up recommending were lots ofsafeguards to protect the privacy of individuals,while promoting the value of sharingdata and using data

to answer importanthealth questions. and protecting the privacythrough rigorous consent processes throughlaws that prohibit using genomic data for thingsthat people didn't give consent for, for technological waysto build in security in data systems and data banks,and things like that. and that was thepurpose of this report. and, interestingly,i think that's what we were trying to achieve,is a balance between the two.

just this week, i think twodays ago, our most recent report came out.and this was also a really interesting exercise.this is going to take a minute to explain what it is.the question was, "under what circumstancescan you ask healthy children to participate in researchto develop drugs or biologics for usein the event of a bioterror activity?"so there's the tension. for the commongood, you want there

to be safe andeffective measures that we could apply rapidly ifthere was a terrible bioterror event.but how much risk can we expose healthy children to todayto get us there, to prepare us for that eventuality?and so you can see the tension gets a little bittauter because it's children, as opposed to competent adults.and the idea of a bioterror eventis so frightening to so many people,but also totally uncertain.

we have no idea if we'reever going to have one. we hope we'll never have one.but we sure as shooting want to have things in placeif we do have one. so how do you reconcile thesevery important interests that come into tension here?and we decided, as a commission, certain kinds of researchbefore an event could take place,but it had to be very, very controlled with respectto how much risk. so minimal riskresearch would be fine.

in the event of anything thatwas above a minimal risk-- because none ofthe kids are going to benefit in thesekinds of studies-- it would have tobe limited to what the current regulatoryframework calls "minor increment overminimal risk," which is a one complicateddefinition for that. and there's aprocess that it would have to be reviewedat a very high level.

and there's an ethicalframework for how to think about what otherthings need to be in place. and i'm happy to go throughthem in the question and answer, if you want to.the last thing i just want to mentionis the bio-banking, because this is another onethat-- the commission is not working on this,but some of my colleagues and i are thinking a lotabout this at the nih. and the particular questionhere that i think is interesting

is the one of consent.so we believe, in many aspects of life,that individuals have the right to consent or notto certain things that are being asked of them.and in this case, it's donating their samples to a bio-bank.at the same time, we know that bio-banksare-- as a great resource for scientific research,the exact research that's going to bedone with some of those samples is not known today.and so, many people

have suggestedwhat we need is a broad future consent.so in other words, i ask you today,are you willing to give me your sample to put in this bio-bank?we will have xyz processes in placeto review the proposals for how it will be used.but we can't tell you today what they are,and we're not going to come back and ask youeach time we use it. again, some people sayabsolutely critical.

the value of thecommon good here is that there's so much greatresearch that can be done, and the only wayit can be done is to have these massive bio-banksto understand certain things. others say, consent requiresmore than this blanket "ok, you can use my samplefor future research." and so, i thinkwhat we're trying to do in my shop is come upwith a way to give people information thatallows them to have

some options without completelyshutting off future research that we can't predict right now.and that's one way to resolve that tension.so, with that, i think my time is about up.i was going to end by saying, i think this eclectic selectionof pictures, which were selected to say that, as a health careprovider, and as a bioethicist, i think i am--and i'm sure many of you are-- committed to both the interestsand goods of the individuals that we connectwith in our professional life.

that's a lot of what we'recommitted to as nurses, is taking care of patientsthat are assigned to us, whether they'reindividuals or communities. and at the same time, in so manyways as health care providers, as researchers, asbioethicists, as administrators, as policymakers, wehave responsibility for thinking aboutthe common good, and for valuing the commongood, and for making the tough choicesthat we sometimes

have to make to get the rightbalance between those two. so with that, i'll stop andtake questions or comments. [applause]total agreement? can you describe the bigimpact that policymakers leave, and the house andsenate have on what's being used with yourdefinition of the common good? i guess stem cellresearch is a-- is an example?so the question is-- a big one-- cani describe what policymakers,

such as individualsin congress, what impact their decisions have on my work?and you mean my work, or the nih's work?ok. the example given wasstem cell research. so i don't how manypeople in the room know about the restrictionson stem cell research funded by the nih.but they are the direct result of congressional action.and so the simple answer to your question is, a lot.there's a law on the books,

the dickey-wicker amendment,that gets put into the appropriations bill every year,which prohibits any federal funding for research thatcreates, destroys, or has any potential for negative impacton an embryo. and so that's takenvery seriously. and there's no federalfunding for any research that remotely lookslike it's doing that. however, years ago, and thenreinstated by president obama when he was firstelected, there is a way

that the nih fundsstem cell research. so the stem cells are derivedfrom embryos in many cases, but not with federal funding.it's done private funding, state funding, international sites,whatever. but once they'recells, then research is able to be funded by the nih.and the process involves a very careful reviewof the details of how consent was obtainedto use the discarded-- well, theyhave to be embryos that were

created for reproductive usesbut not needed for that-- excess embryos thatwould be discarded. then there's a lot ofdetails in the regulations and in the guidelines aboutwhat the consent process has to look like in orderfor the embryo owner to donate their embryos,to make stem cells. and so all thathas to take place. and so when a stem cellline is submitted to the nih to be registered as apossible source for funding,

for research, there'sa very involved process of going through thatchecklist and reviewing how things were donebefore it's decided to be put into the registry.that answer your question? i think my ownwork-- you asked me versus the nih--my own work, i've been involved a little bitwith the stem cell guideline committee.i do sit on a committee that looks at studies to make surethat they comply with the

dickey-wicker amendment.some education stuff like that. i have some peoplein my group that are working on ethics related toinduced pluripotent stem cells, and trying to developtemplate consent language, and think carefully abouthow induced pluripotent stem cells are used in atherapeutic environment. yes?dina gucci. how do you tackle issues whereyou find the common good when you have such competingreligious views?

the question was, howdo you tackle issues where you find the common goodin competing religious views? you mean me?in my-- even just where you beganto-- how would you-- how would i do it if ihad an ethics consultation request, and thesituation involved, in some way, competing religiousviews about the common good? i think, probablyfirst and foremost, is trying to get a handle onwhat people believe that means.

so trying to understand whatthe different viewpoints are and how differentthey really are. which, as i said earlier-- andi think challenge everybody in the room-- i think you'vegot to really sit back and ask yourself, what do youmean by the common good? it's not such aneasy thing to answer. and so that wouldbe where i would start, if i had some situationwhere i had seemingly competing views.first i'd have some

kind of a conversationto find out how different were they, really?and then i think-- again, it's hard in the abstract,but i think depending on the situation,i might try to find some kind of a compromise.something that would be ok for each of them,but not necessarily exactly what either one of them wanted.something like that. i guess i used theword [inaudible] sometimes becauseit is less yielding.

less yielding.although, religious views are often very unyielding,but so are political views often very unyielding.they are religious. they are religious,yeah, in some fashion. yes, bill?i actually have a question from one of our online nursingstudents in illinois, who asked, do youfeel the restrictions need to be decreased or changedin regards to clinical research in orderto prevent companies from

going to other countries,or make the companies follow the same code to researchno matter where they decide to do their research?thank you from illinois. the first part was the rules?yes, and wondering if the restrictions need--restrictions. that was the word iwanted to remember. i do think that the ethicalprinciples and the ethics of doing clinicalresearch are the same, and should be the same,no matter where it's done.

i'll say that, and icould say it again, because i reallybelieve it strongly. that the ethicalprinciples and the ethics of doing good clinicalresearch that does deal with a tension betweenthe goal of research for the common good and theprotection of individuals that might be part ofthat activity-- i think those principles shouldapply no matter where you are, no matter what kind ofresearch you're doing.

with respect torestrictions, certainly, it depends a little bit on whatthe questioner had in mind. i mean, there are regulations--for example, any company that wants to develop aproduct through research, and wants to have theirproduct approved, ultimately, by the fda so it can besold in the united states-- they have to followthe same regulations that a company doingresearch in washington, dc would have to do.the same regulations

apply if it'sgoing to be approved by the fda. they're differentfrom fda regulations, but the same regulationsapply if they get funded by the unitedstates government. and there areinternational rules that many governments have builtinto their national legislation governing clinical research.so there is quite a bit of harmonyalready, in terms of the kinds of rules and restrictionsthat do exist.

let me just say onemore thing about that, and then i'll goto what's harder. i don't think thereneeds to be more rules. i don't think there needsto be more regulations. i think there might need to bemore harmonization of the rules that do exist so thateverybody's aware that they're are already there,and they're not that different from one another.i think what's harder, though, is how the rules,and how the principles get

interpreted on the ground.and how much the people who are involvedin designing, conducting, reviewing, and protestingagainst the research understand about that.you know what i mean by that? i mean, i think there'sa certain level of-- both on the part of people who tryto get around the rules by doing something that many wouldconsider shady, but also even those who are trying their best.there's a lot of pressure from different directions.and so, making sure that

people involved in researchat every angle have as much information, education,and an opportunity to talk to each otherabout what they're trying to do is critical in that,including the communities in whichthe research is being done. hopefully that helped her.anybody else? students?yes? you're not a student.you're a student. can you talk a littlebit about-- so there

were two reports, one fromoctober and one from march, how that plays out?what's the process? who's at the table?how do these conversations occur?ok. so the question was aboutthe president's commission. so, the president's commission--this is president obama's commission-- has beenin existence since 2010. and we've taken onfive projects, i think. i just showed you two of them.let me go back

even one more step.so for those of you who know about commissions,there have been about five-- if i'm correct-- five bioethicscommissions in the united states.the first one was in 1974. it was an act of congress theycreated the national commission for the protection of humansubjects of biomedical and behavioral research.long name that everybody always calls the national commission.and that national commission did a lot of very important workwith respect to

research, understandingthe ethics of doing research, and puttingthe groundwork in place for the regulationsthat we currently use in research.it was followed by a president's commission in the early '80sthat was also, called the president's commissionbut appointed by congress, that continuedto do some work on research, but also dida lot of other interesting work. definitions of death,life-sustaining treatment,

allocation of resources,interesting reports that they put togetherin the early '80s. and then there was a gap.there was no commission for a while,until president clinton created the advisory committeeon human radiation experiments to investigatea series of experiments that were donein the '50s in the united states using radiationon very vulnerable people, for the most part.and then, subsequent to

that, president clinton alsoput together the national bioethics advisory commission,or nbac. and they did a lot ofreally important work, too. but you see, the firsttwo were congressional. those two werepresident clinton. when president bush--george w.-- was president, a new commission cameinto existence under his administration.it was called the president's council.and they did some

very important work.very different style than the previous commission.and in fact, the second head of that commissionwas dr. pellegrino, our beloved dr. pellegrino from here.and then when president obama was elected,he appointed a new commission. so the currentcommission is his. who are the members?the members span a wide range of backgrounds.some are scientists, geneticists, physicians,philosophers, lawyers.

it's the firstcommission of those that i named that hasfederal employees as members. so i think i fitprobably four checkboxes. i'm a woman.i'm a nurse. i'm a bioethicist.and i'm a federal employee. so i'm one of them.so you asked, what have we done? the first topic we tookup was synthetic biology. and we were askedby the president to take it on, because itwas the summer of 2010,

and craig venter had justpublished-- some of you may remember-- a very seminalarticle in science, i believe, about creating new life,is the way he described it. and so there was thishuge uproar in the press. and the president said,commission, get to work. so we had our firstmeeting in july of 2010. and we had a learning curvelike this on synthetic biology. and by december of 2010, wehad a report to president obama on the ethics ofsynthetic biology.

while we were finishingthat up, there was a finding exposure of aseries of research studies that had been done in guatemalain the 1940s, sexually transmitted disease research.and so that was our second assignment,to do both a historical investigationof those experiments, and then to gofrom the historical investigation to lookingat the current, contemporary environmentand answer the question,

could something like thathappen today? and so we had threereports from that work. the third topic was thewhole genome sequencing. the fourth was thepediatric countermeasures, which was really instigatedby a specific question about testing anthraxvaccine in children. and now our next topicis incidental findings, which is a huge,interesting topic. certainly came up alot in the whole genome

sequence discussions.but, as we've been talking about it,is really much broader than genetics.i mean, it's certainly something thatcomes up in all kinds of ways in clinical workand in research work. and so we're just about tostart looking into that. any other questions?any of you students want to be bioethicists?well, i appreciate everybody coming out tonight.i know it's in the evening

and it's also cold.but it's nice to see some familiar facesand some new faces. and we just wanted to thankyou so much for coming here. thank you.thank you very much.