200 Years; Human Subjects of Research

from communication center the university of texas at austin this is two hundred years in the year nineteen seventy six the american republic celebrates its two hundredth anniversary as a part of the us bicentennial program at the university of texas at austin two hundred years explores the past present and future dynamics of history's longest living democratic society this as rex we're for two hundred years this week we'll be talking about research which involves human subjects with us are old and sutton vice president for research at the university of texas at austin and professor of zoology alan smith who holds the mr moses finds h baker professorship and wall at the university and james berry ut austin professor of psychology you know much of what we know regarding human development that is behavior and physical makeup is a result of many years of research which involved human subjects there is now an increased awareness and

concern for the rights and the welfare of human subjects of research is this a rather recent the balm of my history of the human research effort john wall i think experimenters always been concerned with these kinds of ethical issues relation to work i think it's part of a larger cultural issue in our society of the increased concern with human rights and welfare and what's your reaction on allen well i would say that to be concerned began to be focused at about the time of the nuremberg trials after world war two and so if you're looking for a turning point it was the revelation of the nazi experiments led to really focused attention on things that might happen sometimes that had happened in the united states the new new england journal of medicine about twenty five years ago starred point out some of the things that were happening in the united states and i would say that those are two more focal point and probably

one of the greatest fears of a new discussion in those areas in your feel old and yes i am a minister the court and human genetics them have carried on one now would be called human experimentation for some years and admittedly at the time i started i didn't think of myself as doing much in the way of human experimentation there is an additional dimension to add to the commons already made at one time we could count on the innovation say an information management to protect individual rights we now know how to manage information and with that we also have opened up some new areas at risk well before we get started to define the areas we have a non human researched us what kind of humans are being researched and what kind of projects are being carried out in this country and present time which one of you like to start on the

quad obviously i think in service that's a tremendously wide variety of other individuals who are not only engaging in research that are being subjects of research in my field in psychology for example it will range from the human fate is all way too terminal patients with illness mandate herded conferences for a comprehensive and people with all degrees of mental competency and incompetence in their motion today wanted to the world among the year especially in the area of the sciences and then when combined with the legal concept of the war lay the terminology human experimentation i'm afraid in that tends to conjure up a frankenstein situation

that is not at all what this meant by human experimentation at the present time those of course include medical experimentation it also includes any aspect of a person's existence that we could comply risk to that person and i risk i do not mean physical risk just her own but the risk of embarrassment that information were to become public would that person be embarrassed or would he suffer financial risk to use person examples i have them to collect a lot of genetic information on various persons for scientific purposes which are of no medical interest in fact i'm not sure that anything that are made for some that all except me however one could use these data to generate some information about persons that they might theo should not be released

there's always the potential revealing their legitimacy and here's one could protect both the subjects as well as an experiment or by simply keeping the files law but with new open records laws we have the concern also that a person who has been a subject may now see whatever you have in these files and so you have to think very carefully before you collect information which he might find distressing should he insisted on seeing the clouds you know context of what we call human experimentation has changed greatly from the picture that existed two decades ago or even a beckett why is it is this china has exchange occurred and concern and then when i look you know thing of the supreme court you know for a number of years when the direction of privacy which i understand has a year

can set to in terms of all of this country and now they seem to be reversing themselves well there is a very strong trend toward the river seine i think you have to put this thing and one perspective we have become over the last twenty five or thirty years of gretchen longer approved a condiment a very litigious people who were previously we won't solve our problems informally or through educational institutions and through politics were increasingly turning to the courts you mean so that to people who would've thought to twenty five or thirty years ago about suing for something i think about it and there are lots of people who promote thinking about it and sometimes a bit the kinds of interests that they allege that they're serving are not obvious to

everybody else hold imagine for example or two some people might resent having facts about themselves revealed to others another aspect of privacy or something just discussed in terms of privacy is simply the desire to be free from intrusions having people peer at you look at you or gather information about you whether they use it in some or reveal or to others or not many people find offensive or insulting another aspect of that is that there are some signs that perhaps the argument can be made that we as a people don't want experimenters to do whether a particular individual as our modern art one example would be offering are fooling with some ways to add genetic material is danger chromosomes in such a way that for example you might do it produces three arms instead of to do that we as a people might decide that however are three armed person might feel about having three arms we as a society are not too happy about fooling around with genetic material so as to produce that kind of invading

another example is in the area of such research presumably the people who volunteer or participate in sex researcher are happy about it but to many the rest of society isn't and so that's a form of human experimentation which legal institutions in society might well discourage or punish or private even though the individuals participate in her turquoise i know one thing that many college freshmen our smallness of more lovable participated in the so called experimental work demands psychology now what kind of reaction are you getting in that direction today well i think there's certainly an increased awareness on the part of psychologists who do research with college students that the whole issue informed consent be an arrow part of the research experience for the individual and

this includes the making a were truly individual subject what it is that they that he or she is going to be experiencing and in the course of the research and spelling that out in detail man as well being concern about possible negative effects for the individual in terms of their emotional state or their physical wellbeing one handy and this is a general part now of all human experimentation and research that's done in most universities are doing in this one and in fact the american psychological association has promulgated a very specific set of guidelines to coral psychologist there's still on many gray areas obviously that operate in terms of the issue of informed consent and the issue the fact that the subject is free for example is told that he or she is free to terminate participation in an experiment at any

time they feel they can continue our there are certainly a lot of implicit sanctions that operate on people they make are not quite as free as the white below jam how can you possibly run and the fact is psychological experiment which presumably would record something of a naive subject right after you fully explained to the word is that they're going to be exposed to pretty much what it is you're trying to do as much was well i think that it has a problem and there isn't an easy answer to that that the most extreme example of that would be experimentation in which there was the section involved as part of the experimental procedure the milgram yes some some implicit her purpose that was not made clear because it would obviously biased the whole experiment in my experience this type of experimentation is is decreasing

because of these ethical problems and the the burden is on the research or to come up with new methods of studying those kind of palm lined using deception or other kinds of less than frying kind of disclosure but it still is not completely resolved robert guidelines aggression you've mentioned in the area of psychology that your national association has come in that direction old and they sounded the carrier that we have any way that we can ensure an individual that the participants are most at least he will be protected according to his concept of being protected we've all the same kind of guidelines the problems are somewhat different in solving them an area of informed consent is a very large issue in genetic and chemical and medical research how do you take a naive person and inform them of the molecular

studies that you have in mind then obviously you can't have trouble informing why you are a few seniors to what i'm doing sometimes much less someone who perhaps is not completing high school what happens to be the very person with the interesting trade that i want to study one solution to this has been to describe the procedures of horror as they themselves will experience them in my case this happened largely to be limited to drawing a blood sample that the routines are the most persons have experienced and explaining to them that the sample will be used for research that it will not be and they used the information from it will not be used to embarrass them into a sample to rico did think of the story i'm not at all sure however that that practical definition of

informed consent would satisfy our legal friends who said it is well you know i would go when i was a little earlier there are certain kinds of interests of people that can they can get what that is they can consent to having those interests while it in some way so that if i don't want somebody intruding into it privacy of play asking if when i like him telling us it's okay but there are some other kind of interest that you can say that it might involve notions of consent at all for example we might say that if the golden wants to take blood samples from prisoners and in prisons which has been a favorite form of experimentation for a long time that even though the prisoners says i'm willing to look behind it and it may not really be so willing because you might be getting i was a sentence as a result of going on blood sample and what appears to be consent really isn't concerned after

all and then there's the problem that the elderly first two person can say i'm like my consent but if he's unable to understand what's happening to him is consent is not really real science informed so that he's just mouthing the words and what we might be trying to accomplish really doesn't accomplish by having him now the word so we always rumors that in one way you're involved with human experimentation well that brings us to mother interesting idea which is are the benefits that accrue from this kind of research are these kinds of research enough of it into society a warrant for content months despite the fact that certain individuals within the trombone a one degree or another in the process was that is that they've got the determination to make here at the university

we ask investigators to to make an estimate of that kind of risk to the subject relative to the potential benefits that her new crew for many acres thirty and my own experience i think in the field of psychology would be that that increasingly risky types of research have become less common and so on it's not clear to me that were doing research that has a greater potential value to humanity on the causes that but i think it is clear that we are doing less research or research in a less risky sort of way and i think that's a salient in a positive outcome of this kind of concern that we're concerned with here but that is obviously a much more difficult to determine and

billions more to the side in some other areas and the polluted here like in the genetic carrier involved physical wellbeing of individuals as alissa a lot of reaction when you start talking about genetic engineering he engineered a million ms eric willis possible i will try to dispose of that each juror by saying that what is usually meant by genetic engineering on certain experiments going on right now do not involve human subject anyway and the concern of ours much of the risk in genetic engineering is really another subject one will develop microorganisms that will be a risk the man but the experiments and so you're not involving human subjects so badly the whole area of biohazards research

as the listeners another programmer so that yesterday in the house of that in terms of the genetic engineering support man is concerned i do this only owes they benefit i cannot conceive of any geneticist attempting to alter the jena type of another person who would not stand to benefit substantially here we're talking about a person's wins serious inherited defect and the efforts to change their genetic constitution would be purely in terms of trying to provide them with more functional gains and therefore a very substantial benefit all that we have the masked sterilizations under various kinds of you know their assumptions and forty one presumably for the benefit of the group of the laws we

have sterilized institutionalized effect is on the assumption that they had trans miscible characteristics which it was not desirable to continue in the year and the jingle we're done many things over that city in historical times based upon assumptions that were incorrect not all of them limited to the area genetics or medicine we're going to broaden it well enough to bring him a psychologist the way you do well you know the program two hundred years is celebrating a part of our bicentennial would each of you gentlemen or would any of you gentlemen like the risk prof assignment we could anticipate the future in the area of human experimentation in research now you've given us a few ideas as we go along and pointed out that the psychologists are spreading more warily and alden points out nobody will get

his genes alter move up at least a non about him concerning good what about future can you predict well i think it's it has hazardous to protect i think we won a difficult areas who haven't read the fall that year another scenario they will be a major holiday bing research with young human beings infants and young children because a lot of us in psychology taylor we have much to learn about future for seo involvement by understanding more about the early experience of the individual and of course this raises major difficulties in the field of experimentation there are a lot of experiments up from a scientific point you might be worthwhile going to answer questions rather specific way you know i cannot

separate what happens to children when theyre separated from their parents or other kinds and then we obviously practical reason can't do this we have to engage in studies with adopted children or foster children i think that our we can we can just take it will be what's more interest in these kinds of early developmental problems and because we're dealing with children and because of such problems of informed consent for a questionable state assimilation children they're going to be a number of increasingly difficult issues to deal with an overt it that the continuing developing a deal of concern and in psychology now the two old and aware of bananas from their time perfecting the genetic traits so that we can develop super athlete pole well i hope not there and there are some approaches that can be used her to get around some of our problems and you know at

the end of it experiments of course will help fund some extent one breakthrough that those change the genetic experimentation much medical experimentation ends the use of cultured cells now one may debate whether the piece of tissue removed from a person remains human or not but at least it has not reached the law courts yet unknown reasons and tissue brings research sensei well until that day one can get just about anything you wish to have the obesity issue that has two and this in fact has opened up possibilities for research that never existed working with human beings no there are ways around this barrier working with people and a malloy teacher and privacy well i guess

a clue what we're going to experience a shaft wrong level of decision making about namely the individual experimenter primarily to group decisions about what might be saying any easier tonight but there remain difference what war large numbers of them are being made in the department of health education and welfare in washington right now and of course on my question whether that's better than the individual experimenter but i think that's the trend of the future legislation regulation and that sort of flying trying to deal with problems rather than this today we've dealt with a topic and two hundred years research which are involve human subjects that is quite interesting to each another one of the stamps most people it's an argument subject our analysts today have included elden sutton vice president for research of the restive taxes a boston professor of zoology how and smoke billows the

most and moses finds h baker professorship and law at the university and james berry ut austin professor of psychology mr grech where for two hundred years two hundred years as part of the united states bicentennial program at the university of texas austin is a continuing series of weekly conversations about the past present and future dynamics of history's longest living democratic society two hundred years communication