After Henry Harris and John Watkins started to experiment with combining human and animal cells, the media released the headline, "Man-Animal Cells Are Bred in Lab… Next Step Could Be Tree Men… Scientists Create Monsters." In addition to the ethics of medical practices, Henrietta Lacks touches on the ethics of journalism and media. As the doctors and scientists experiment with cells from Henrietta's body, they justify their work by explainning how HeLa cells will lead to a cancer treatment. As new discoveries are made, new theories and new claims are made to the public regarding what great and horrible things, ranging from growing hearts from scratch or developing human mutants, could be created for the benefit or detriment of society.
The question I pose is this: What should the media be able to say about a new scientific theory or promising experiment? When the scientists wanted Day Lacks' consent to take blood samples of the rest of his family, he did so under the impression that his children's cancer would be cured because they gave blood. In reality, that scientist could guarantee such a development. We are still devoting billions of dollars to continue researching various cures to cancer.
Many people, like Day, depend on scientists, teachers, and the media to tell them the facts. I think that the media and professionals should not take advantage of that trusting relationship with the common person and try to tell people to best of their knowledge what is happening to their world right now. That is what doctors are now required to do before the simplest procedures - go through the steps of the procedure, make sure that the patient understands it, and then say what possible side-effects there are. Media should treat its analyses the same way. If there is some speculation or a possibility of a new discovery, the media and professionals should make note of that in their lecture or their article. I also think that media tries to stretch the truth to attract people to watch their programming. Do you think that pure truth is what should be discussed between professionals to the common person? Among friends? Do you then think that people would rather want the media to cover an exaggeration of the truth rather than the truth itself?
Even in her death, Henrietta is mistreated. No obituary. "Colored freezer." (89) At least they asked Day for permission (only because law mandated) to perform an autopsy and take some of her cells, unlike their failure to ask while she was living as there was "no law or code of ethics required... to ask permission before taking tissue from a living patient." (90) One would think that such an "immortal" individual would at least earn some respect from those benefitting from her. The least they could have done was pay for her body to be shipped decently to her burial site! But rather, the doctors and researchers treat her as just another experiment, and her husband, Day, having virtually no money, is responsible for paying for her movement on a train ride--the best he could afford. (91) Not until 20 years after her death were her respectable human name and photo ever attached to the HeLa cells that had been circulating in labs for decades.
This attitude exactly is the reasoning behind the extensive regulations in research. Out of the NEED to succeed, some researchers do not have the temperance to step back and respect the toes they have stepped on to reach their findings. Not making good choices! Even if these doctors' motivations were to help others and save lives, they needed to acknowledge and give respect to those (and the family of those) who helped them get to where they were.
Enough ranting about unethical practices in the 1900s. :)
I agree Michael, that people would definitely rather the media tell the whole truth than providing only misleading exaggerations. Poor Day thought his family would receive direct help and a cure for cancer by giving blood, but was rather being manipulated further, without full understanding, for research. In research and medicine, I believe it is necessary that we are fully disclosed on all possibilities and risks. I think we have come a long way in this area, with lengthy disclaimers on commercials and even lengthier waivers before medical procedures. We are all humans, and deserve the respect and truth that Henrietta never received.
I decided to take a different approach to reading this week’s section of “The Immortal Life.” In “Death,” Rebecca Skloot discusses the innumerable applications of HeLa cells and, after reading only a few pages, I quickly realized that the section is a virtual cornucopia of ethical violations. As I read, I took note of each practice that I considered to be unethical and tried to apply the relevant principles that we’ve learned in class thus far. Here are a few that I found:
In Chapter 13, titled “The HeLa factory,” we see HeLa cells penetrating and ultimately furthering numerous types of scientific research. Much of the research was done by none other than George Gey, who used Henrietta’s cells to study hemorrhagic fever, the causes of cancer, and the differences between normal cells and cancer cells. Because he was too busy dealing with the distribution of HeLa cells, however, Gey never had the time to publish his work. Eventually, other scientists began to publish work almost identical to that that Gey had done, meaning that they received all of the credit while Gey was left in the dust. Gey felt wronged, and lamented the fact that he had allowed HeLa cells to get so far out of his control. How should we ethically consider this issue? We could take the side of the other scientists; Gey voluntarily let them use the HeLa cells, which fulfills the principle for ethical conduct in research of openness (the sharing of resources and material). The scientists were also fulfilling their social responsibility by sharing their work with the world, whether Gey was ready or not. They may or may not have had any knowledge that Gey was working on the same studies to begin with. If they did, however, we could perhaps take Gey’s side. The scientists who published Gey’s work using his revolutionary cell line technically may have disrespected their colleague and his intellectual property, violating two ethical principles in one. Whichever side you take, there is certainly an ethical dilemma at hand.
In Chapter 14, titled “Helen Lane,” Gey is finally persuaded to release the identity of Henrietta Lacks to the “Minneapolis Star” (note: the name he released was actually a pseudonym, ‘Helen Lane,’ but later publications correctly reported the name Henrietta Lacks). Gey’s decision to reveal her name violated what is perhaps the most important ethical principle of all: that of autonomy. It could be argued that, because Henrietta was already dead, she could not have possibly made a decision concerning her own affairs and thus was not wronged in any way. In some ways, I feel that this argument is valid. The release of Henrietta’s name, however, also violated the autonomy of her family, and that is what I feel is the real issue at hand. The Lacks family should have been viewed as autonomous human beings; they should have been able to decide whether or not they wanted to forever be linked to the cells. Because Henrietta’s identity was revealed, the Lacks family became public figures that were, and still are, constantly hounded by investigators and press. We could also say that the family’s justice was violated, especially in the sense that they were established as the relatives of Henrietta Lacks but were not able to profit from the numerous applications of her cell line. Her family certainly was not treated fairly.
I marked a total of 12 ethical violations, so I could make this blog post quite lengthy. I will conclude, however, with a brief discussion of the wrongs done by Chester Southam mentioned in Chapter 17 (“Illegal, Immoral, and Deplorable”). In order to discover whether or not cancerous HeLa cells would infect the researchers working with them, Southam, a virologist, injected numerous cancer patients with saline solution mixed with HeLa. The patients were unaware that they were being injected with cancerous cells, and, in several cases, the cancer grew and spread. Southam did similar studies on hundreds of prison inmates. In the context of today’s society, it is very easy to discern that these practices are very wrong. But why? First, Southam violated the principles of autonomy, nonmaleficence, and justice in one fell swoop. The cancer patients on which he practiced were unaware that they were being injected with cancer cells; they thought that they were receiving treatment. It was thus impossible for them to refuse the injections, violating their right to make decisions regarding their own well-beings. Furthermore, several of the patients were physically incapable of making decisions to begin with—one had Parkinson’s disease, for example, and another didn’t even speak the same language as Southam. It was also ruled many years later that, because prisoners are in a vulnerable position, they are also unable to give informed consent. Southam didn’t just perform studies on patients without consent; he also caused them harm, even after he realized that the injected cancer cells could develop into tumors and even metastasize. As far as principles that relate specifically to research go, Southam very obviously violated the principles of honesty, respect for research subjects, and stewardship by lying to and harming his patients. Finally, he violated the Nuremburg Law (respect for the law), claiming that it shouldn’t even apply to modern doctors in the United States.
Andrea, I love your idea of going through and taking notes about the ethics violations that take place in this section. I noticed so many as I was reading but didn't bother to write them down, but your above comments pretty much cover everything. The concept that hit me hardest during this section, or at least the point I found very disturbing was the chapter on the "Night Doctors." When Rebecca is finally allowed to talk to the brothers, and they get into ranting about Hopkins, they mention how they "just snatch em (neighborhood African Americans) off the street" (165). The Lackses talked about how they were all taught from a young age to be aware of Hopkins and not to be out and about near the hospital at night. They mentioned how they were known to do experiments on African Americans. I was horrified when Rebecca talked about how doctors would do experiments on slaves, and would received numerous bodies in crates labeled "turpentine." It is obvious that this was unethical, or else why would they insist on hiding the true identity of what was in the crates? It was more so disturbing that many of these bodies were obtained from graves. The slaves had no peace in life or death. I suppose this practice sort of went along with the attitudes of the time, but I find it extremely difficult to believe that anyone could ever consider this morally right? I just don't understand how they justified their actions by doing such things. I also noted the story of the claim of two women who said their children were purposefully exposed to lead. How could anyone justify doing this to other human beings, let alone children? The more I am exposed to some of the practices of this time period, the more I am absolutely appalled.
To answer Michael’s question, we live in a country that holds as a fundamental right for the media to be able to print what is true and no harmful about the research being done by scientists. It would be unethical for journalists to write that a scientist’s research is faulty or lies as it would hurt the scientist’s reputation, but there is no reason that the media cannot inform the public of possible detrimental outcomes of a scientists experiment, even if the conclusions that these scientists are drawn are far-fetched. That is the definition of free speech. It is their job to inform the public, and their right to do so as they seem fit as long as what they are saying is not blatantly harmful to another or a lie.
In reference to this section of the book, I find it abhorrent, although not surprising given the other indecencies she was exposed to in her life to hear the different ways that Henrietta was mistreated even after her death. It is amazing that someone whose stolen contribution to the medical field is currently buried in an unmarked grave. It is only merely speculation now where she is buried, as no one knows for sure. This book is truly eye opening on the ethical violations of the early 1900s and makes me wonder what sort of these violations are continuing today. Our world is not without ethical misconduct and the more I read, the more I become skeptical about what I allow to be done to my own body medically.
I was very interested while reading this section of the book especially because it took us deeper into the medical practices of the mid-1900s and I was able to see what kinds of awful crimes against humanity had to take place before doctors finally agreed that full patient consent needed to obtained and that all medical practices should be held accountable for obtaining it. Recently, when filling out some of the paperwork before a doctor's visit or even a consultation for oral surgery, I became somewhat annoyed by everything there was to complete before I could even go in and talk with a doctor. Any annoyance I felt has completely gone away since reading this section, especially the parts about Southam's experiments injecting cancer cells into unknowing participants. Informed consent is, to me, the most seemingly important aspect of any medical practice or research. It shocks me that when Southam was doing his experiments, he and others saw this idea as something to be taken lightly. It might have gotten in the way of the research he was trying to do, and the research was obviously more important to him than the replaceable subjects he was using. We must never diminish the idea of autonomy, of a person's right to know what is happening to his/her body and the person's right to say no to anything anyone proposes to do with his/her body. This is central, and this section of Henrietta has made me see that all the more.
* "bad blood" -- you are reading about one example of mistreatment of African Americans but there are, unfortunately, many (p. 166-7, 181, 275). Be award that there is a "legacy" of mistreatment within the African-American community, which affects trust between that community and the medical research community.
* IRB (p. 187) -- we'll talk about their role in research with human subjects in RCR chpt 12. Also with HIPPA (p. 198).
* genetic therapies & treatments -- we'll talk more about these in RCR chpt. 14.
* selling body parts, tissues, cells -- we started a blog topic based on Andrea's question in class a few weeks ago. As we move into the discussion about genetics & research, this topic will arise again. Note discussion in Immortal Life, p. 201-6, 267
* HPV vaccine has been in the news lately. Discussion of history of its creation, p. 212
In response to Michael’s comments—yeah, it’d be great if we could all get facts. If we could see with our own eyes what’s going on. But that is impossible—when reporting in any subject. The public does not see an assassination with their own eyes and cannot. It always sees events after they have been filtered many times. The eye witness of the event filters it through their own eyes, whoever they work for filters which stories are told and which are not. In science, I suspect this is even more true. A great majority of the public would not understand raw data if it were to be published, and it’s not published by the biggest media companies anyway. They all give you their take on whatever the scientists say. Many times, in fact, the public does not even get scientists’ opinions on scientific discoveries. Many times we get politicians’ views about scientific discoveries—most of whom know no more about science than the little they remember from their high school biology classes. In other words, we shouldn’t trust them any more than we should trust ourselves. I don’t think this is right, either, Michael. But it happens—again and again. Like Dr. Cate’s above post—the HPV vaccine has been in the media a lot lately. http://www.npr.org/blogs/health/2011/09/13/140445104/pediatricians-fact-check-bachmanns-bashing-of-hpv-vaccine. This article talks about Bachmann’s scientifically unfounded statements about the vaccine. Not to mention the much more pernicious myth many have clung to about the connection between vaccines and autism. But what can any of us do about this? People don’t like listening to scientists, it seems. People are scared of what they do not understand and most of us do not understand science. Hence the sensationalist headlines we saw in Immortal Life about tree men. We tend to balk at scientific discoveries—seeing dark visions of apocalyptic science fiction movies. People don’t want to expose their children, especially, to things they don’t understand—hence the vaccine scares. I wonder if this lack of communication between scientists and the rest of us causes a circular problem. We don’t understand them—so they get sick of being misunderstood, and stop telling us everything. They get that “we know best” mentality and decide people’s decisions for them. I can understand how they get this way—I want to vaccine people’s kids myself when they won’t do it because they believe in the autism myth. We could see this tension going on in this section of Immortal Life too—when Skloot was trying to explain to Day and the other Lacks family members about what Henrietta’s cells have actually done for science. They kept misunderstanding the science, turning it into something that was close but not quite correct. This is the same misunderstanding that goes on between the media and the public, but on a smaller level. This same problem happens between doctors and patients. They doctors always* have to filter the information in a way their patients can understand—and where is the line? When does filtration become opinion, or even lies? But scientists are not the arbiters of our decisions—or they shouldn’t be. Even if the patient, or the person who you want to take cells from, can’t understand everything about the issue, that person still gets to decide for themselves. We can’t deny autonomy based on level of intelligence or education—even to save lives.
After Henry Harris and John Watkins started to experiment with combining human and animal cells, the media released the headline, "Man-Animal Cells Are Bred in Lab… Next Step Could Be Tree Men… Scientists Create Monsters." In addition to the ethics of medical practices, Henrietta Lacks touches on the ethics of journalism and media. As the doctors and scientists experiment with cells from Henrietta's body, they justify their work by explainning how HeLa cells will lead to a cancer treatment. As new discoveries are made, new theories and new claims are made to the public regarding what great and horrible things, ranging from growing hearts from scratch or developing human mutants, could be created for the benefit or detriment of society.
ReplyDeleteThe question I pose is this: What should the media be able to say about a new scientific theory or promising experiment? When the scientists wanted Day Lacks' consent to take blood samples of the rest of his family, he did so under the impression that his children's cancer would be cured because they gave blood. In reality, that scientist could guarantee such a development. We are still devoting billions of dollars to continue researching various cures to cancer.
Many people, like Day, depend on scientists, teachers, and the media to tell them the facts. I think that the media and professionals should not take advantage of that trusting relationship with the common person and try to tell people to best of their knowledge what is happening to their world right now. That is what doctors are now required to do before the simplest procedures - go through the steps of the procedure, make sure that the patient understands it, and then say what possible side-effects there are. Media should treat its analyses the same way. If there is some speculation or a possibility of a new discovery, the media and professionals should make note of that in their lecture or their article. I also think that media tries to stretch the truth to attract people to watch their programming. Do you think that pure truth is what should be discussed between professionals to the common person? Among friends? Do you then think that people would rather want the media to cover an exaggeration of the truth rather than the truth itself?
Even in her death, Henrietta is mistreated. No obituary. "Colored freezer." (89) At least they asked Day for permission (only because law mandated) to perform an autopsy and take some of her cells, unlike their failure to ask while she was living as there was "no law or code of ethics required... to ask permission before taking tissue from a living patient." (90) One would think that such an "immortal" individual would at least earn some respect from those benefitting from her. The least they could have done was pay for her body to be shipped decently to her burial site! But rather, the doctors and researchers treat her as just another experiment, and her husband, Day, having virtually no money, is responsible for paying for her movement on a train ride--the best he could afford. (91) Not until 20 years after her death were her respectable human name and photo ever attached to the HeLa cells that had been circulating in labs for decades.
ReplyDeleteThis attitude exactly is the reasoning behind the extensive regulations in research. Out of the NEED to succeed, some researchers do not have the temperance to step back and respect the toes they have stepped on to reach their findings. Not making good choices! Even if these doctors' motivations were to help others and save lives, they needed to acknowledge and give respect to those (and the family of those) who helped them get to where they were.
Enough ranting about unethical practices in the 1900s. :)
I agree Michael, that people would definitely rather the media tell the whole truth than providing only misleading exaggerations. Poor Day thought his family would receive direct help and a cure for cancer by giving blood, but was rather being manipulated further, without full understanding, for research. In research and medicine, I believe it is necessary that we are fully disclosed on all possibilities and risks. I think we have come a long way in this area, with lengthy disclaimers on commercials and even lengthier waivers before medical procedures. We are all humans, and deserve the respect and truth that Henrietta never received.
I decided to take a different approach to reading this week’s section of “The Immortal Life.” In “Death,” Rebecca Skloot discusses the innumerable applications of HeLa cells and, after reading only a few pages, I quickly realized that the section is a virtual cornucopia of ethical violations. As I read, I took note of each practice that I considered to be unethical and tried to apply the relevant principles that we’ve learned in class thus far. Here are a few that I found:
ReplyDeleteIn Chapter 13, titled “The HeLa factory,” we see HeLa cells penetrating and ultimately furthering numerous types of scientific research. Much of the research was done by none other than George Gey, who used Henrietta’s cells to study hemorrhagic fever, the causes of cancer, and the differences between normal cells and cancer cells. Because he was too busy dealing with the distribution of HeLa cells, however, Gey never had the time to publish his work. Eventually, other scientists began to publish work almost identical to that that Gey had done, meaning that they received all of the credit while Gey was left in the dust. Gey felt wronged, and lamented the fact that he had allowed HeLa cells to get so far out of his control. How should we ethically consider this issue? We could take the side of the other scientists; Gey voluntarily let them use the HeLa cells, which fulfills the principle for ethical conduct in research of openness (the sharing of resources and material). The scientists were also fulfilling their social responsibility by sharing their work with the world, whether Gey was ready or not. They may or may not have had any knowledge that Gey was working on the same studies to begin with. If they did, however, we could perhaps take Gey’s side. The scientists who published Gey’s work using his revolutionary cell line technically may have disrespected their colleague and his intellectual property, violating two ethical principles in one. Whichever side you take, there is certainly an ethical dilemma at hand.
In Chapter 14, titled “Helen Lane,” Gey is finally persuaded to release the identity of Henrietta Lacks to the “Minneapolis Star” (note: the name he released was actually a pseudonym, ‘Helen Lane,’ but later publications correctly reported the name Henrietta Lacks). Gey’s decision to reveal her name violated what is perhaps the most important ethical principle of all: that of autonomy. It could be argued that, because Henrietta was already dead, she could not have possibly made a decision concerning her own affairs and thus was not wronged in any way. In some ways, I feel that this argument is valid. The release of Henrietta’s name, however, also violated the autonomy of her family, and that is what I feel is the real issue at hand. The Lacks family should have been viewed as autonomous human beings; they should have been able to decide whether or not they wanted to forever be linked to the cells. Because Henrietta’s identity was revealed, the Lacks family became public figures that were, and still are, constantly hounded by investigators and press. We could also say that the family’s justice was violated, especially in the sense that they were established as the relatives of Henrietta Lacks but were not able to profit from the numerous applications of her cell line. Her family certainly was not treated fairly.
I marked a total of 12 ethical violations, so I could make this blog post quite lengthy. I will conclude, however, with a brief discussion of the wrongs done by Chester Southam mentioned in Chapter 17 (“Illegal, Immoral, and Deplorable”). In order to discover whether or not cancerous HeLa cells would infect the researchers working with them, Southam, a virologist, injected numerous cancer patients with saline solution mixed with HeLa. The patients were unaware that they were being injected with cancerous cells, and, in several cases, the cancer grew and spread. Southam did similar studies on hundreds of prison inmates. In the context of today’s society, it is very easy to discern that these practices are very wrong. But why? First, Southam violated the principles of autonomy, nonmaleficence, and justice in one fell swoop. The cancer patients on which he practiced were unaware that they were being injected with cancer cells; they thought that they were receiving treatment. It was thus impossible for them to refuse the injections, violating their right to make decisions regarding their own well-beings. Furthermore, several of the patients were physically incapable of making decisions to begin with—one had Parkinson’s disease, for example, and another didn’t even speak the same language as Southam. It was also ruled many years later that, because prisoners are in a vulnerable position, they are also unable to give informed consent. Southam didn’t just perform studies on patients without consent; he also caused them harm, even after he realized that the injected cancer cells could develop into tumors and even metastasize. As far as principles that relate specifically to research go, Southam very obviously violated the principles of honesty, respect for research subjects, and stewardship by lying to and harming his patients. Finally, he violated the Nuremburg Law (respect for the law), claiming that it shouldn’t even apply to modern doctors in the United States.
ReplyDeleteAndrea, I love your idea of going through and taking notes about the ethics violations that take place in this section. I noticed so many as I was reading but didn't bother to write them down, but your above comments pretty much cover everything. The concept that hit me hardest during this section, or at least the point I found very disturbing was the chapter on the "Night Doctors." When Rebecca is finally allowed to talk to the brothers, and they get into ranting about Hopkins, they mention how they "just snatch em (neighborhood African Americans) off the street" (165). The Lackses talked about how they were all taught from a young age to be aware of Hopkins and not to be out and about near the hospital at night. They mentioned how they were known to do experiments on African Americans. I was horrified when Rebecca talked about how doctors would do experiments on slaves, and would received numerous bodies in crates labeled "turpentine." It is obvious that this was unethical, or else why would they insist on hiding the true identity of what was in the crates? It was more so disturbing that many of these bodies were obtained from graves. The slaves had no peace in life or death. I suppose this practice sort of went along with the attitudes of the time, but I find it extremely difficult to believe that anyone could ever consider this morally right? I just don't understand how they justified their actions by doing such things. I also noted the story of the claim of two women who said their children were purposefully exposed to lead. How could anyone justify doing this to other human beings, let alone children? The more I am exposed to some of the practices of this time period, the more I am absolutely appalled.
ReplyDeleteTo answer Michael’s question, we live in a country that holds as a fundamental right for the media to be able to print what is true and no harmful about the research being done by scientists. It would be unethical for journalists to write that a scientist’s research is faulty or lies as it would hurt the scientist’s reputation, but there is no reason that the media cannot inform the public of possible detrimental outcomes of a scientists experiment, even if the conclusions that these scientists are drawn are far-fetched. That is the definition of free speech. It is their job to inform the public, and their right to do so as they seem fit as long as what they are saying is not blatantly harmful to another or a lie.
ReplyDeleteIn reference to this section of the book, I find it abhorrent, although not surprising given the other indecencies she was exposed to in her life to hear the different ways that Henrietta was mistreated even after her death. It is amazing that someone whose stolen contribution to the medical field is currently buried in an unmarked grave. It is only merely speculation now where she is buried, as no one knows for sure. This book is truly eye opening on the ethical violations of the early 1900s and makes me wonder what sort of these violations are continuing today. Our world is not without ethical misconduct and the more I read, the more I become skeptical about what I allow to be done to my own body medically.
I was very interested while reading this section of the book especially because it took us deeper into the medical practices of the mid-1900s and I was able to see what kinds of awful crimes against humanity had to take place before doctors finally agreed that full patient consent needed to obtained and that all medical practices should be held accountable for obtaining it. Recently, when filling out some of the paperwork before a doctor's visit or even a consultation for oral surgery, I became somewhat annoyed by everything there was to complete before I could even go in and talk with a doctor. Any annoyance I felt has completely gone away since reading this section, especially the parts about Southam's experiments injecting cancer cells into unknowing participants. Informed consent is, to me, the most seemingly important aspect of any medical practice or research. It shocks me that when Southam was doing his experiments, he and others saw this idea as something to be taken lightly. It might have gotten in the way of the research he was trying to do, and the research was obviously more important to him than the replaceable subjects he was using. We must never diminish the idea of autonomy, of a person's right to know what is happening to his/her body and the person's right to say no to anything anyone proposes to do with his/her body. This is central, and this section of Henrietta has made me see that all the more.
ReplyDeleteSome other topics for consideration:
ReplyDelete* "bad blood" -- you are reading about one example of mistreatment of African Americans but there are, unfortunately, many (p. 166-7, 181, 275). Be award that there is a "legacy" of mistreatment within the African-American community, which affects trust between that community and the medical research community.
* IRB (p. 187) -- we'll talk about their role in research with human subjects in RCR chpt 12. Also with HIPPA (p. 198).
* genetic therapies & treatments -- we'll talk more about these in RCR chpt. 14.
* selling body parts, tissues, cells -- we started a blog topic based on Andrea's question in class a few weeks ago. As we move into the discussion about genetics & research, this topic will arise again. Note discussion in Immortal Life, p. 201-6, 267
* HPV vaccine has been in the news lately. Discussion of history of its creation, p. 212
* Common Rule p. 317
In response to Michael’s comments—yeah, it’d be great if we could all get facts. If we could see with our own eyes what’s going on. But that is impossible—when reporting in any subject. The public does not see an assassination with their own eyes and cannot. It always sees events after they have been filtered many times. The eye witness of the event filters it through their own eyes, whoever they work for filters which stories are told and which are not. In science, I suspect this is even more true. A great majority of the public would not understand raw data if it were to be published, and it’s not published by the biggest media companies anyway. They all give you their take on whatever the scientists say. Many times, in fact, the public does not even get scientists’ opinions on scientific discoveries. Many times we get politicians’ views about scientific discoveries—most of whom know no more about science than the little they remember from their high school biology classes. In other words, we shouldn’t trust them any more than we should trust ourselves. I don’t think this is right, either, Michael. But it happens—again and again.
ReplyDeleteLike Dr. Cate’s above post—the HPV vaccine has been in the media a lot lately. http://www.npr.org/blogs/health/2011/09/13/140445104/pediatricians-fact-check-bachmanns-bashing-of-hpv-vaccine. This article talks about Bachmann’s scientifically unfounded statements about the vaccine. Not to mention the much more pernicious myth many have clung to about the connection between vaccines and autism.
But what can any of us do about this? People don’t like listening to scientists, it seems. People are scared of what they do not understand and most of us do not understand science. Hence the sensationalist headlines we saw in Immortal Life about tree men. We tend to balk at scientific discoveries—seeing dark visions of apocalyptic science fiction movies. People don’t want to expose their children, especially, to things they don’t understand—hence the vaccine scares.
I wonder if this lack of communication between scientists and the rest of us causes a circular problem. We don’t understand them—so they get sick of being misunderstood, and stop telling us everything. They get that “we know best” mentality and decide people’s decisions for them. I can understand how they get this way—I want to vaccine people’s kids myself when they won’t do it because they believe in the autism myth. We could see this tension going on in this section of Immortal Life too—when Skloot was trying to explain to Day and the other Lacks family members about what Henrietta’s cells have actually done for science. They kept misunderstanding the science, turning it into something that was close but not quite correct. This is the same misunderstanding that goes on between the media and the public, but on a smaller level. This same problem happens between doctors and patients. They doctors always* have to filter the information in a way their patients can understand—and where is the line? When does filtration become opinion, or even lies?
But scientists are not the arbiters of our decisions—or they shouldn’t be. Even if the patient, or the person who you want to take cells from, can’t understand everything about the issue, that person still gets to decide for themselves. We can’t deny autonomy based on level of intelligence or education—even to save lives.