indicates, 39.2 percent of articles and transcripts featured discussion of informed consent
as the major ethical issue relevant to the Lacks case, or tissue research more generally, or both. Another 44.8 percent emphasized the theme as a secondary concern. In total, 84 percent of articles or transcripts mentioned informed consent
. As an example, consider this lede from a review at the liberal Mother Jones
magazine: “When Henrietta Lacks – a poor, African American tobacco farmer from Virginia – checked into Johns Hopkins Hospital with cervical cancer in 1951, she had no idea that tissue removed from her body without her consent would become one of the most important resources in medical history”
Percentage of articles featuring major/minor emphasis on ethical theme
Though the theme of informed consent dominated popular discussion of the book, also prominent was an emphasis on the welfare of the vulnerable (18.4 percent major emphasis; 36.0 percent minor emphasis) and compensation (19.2 percent major; 52.8 percent minor). In total, 54.4 percent of the articles or transcripts analyzed mentioned ethical considerations related to welfare and 72 percent mentioned considerations related to compensation. In discussing the theme of welfare, many articles/transcripts alluded to the unethical treatment of blacks historically by the medical establishment in the U.S. Specific to compensation, many reviewers or journalists noted - as Skloot does - the contrast between the profits generated by HeLa cells, and Lacks’ family inability to afford health insurance.
Ethical themes that comprised a second tier of prominence included scientific progress, patient control, and accountability/oversight. Thirty-four percent of articles and transcripts emphasized scientific progress, 23.2 percent emphasized control, and 26.4 percent emphasized accountability, though few featured these three themes as major considerations.
An example of the argument that scientific progress should be given greater weight than other ethical considerations appears in a news story run by the trade publication Internal Medicine News
. In this case, a scientist is quoted as expressing concern over the attention that the book has generated: “Rebecca Skloot’s book on Henrietta Lacks ‘has raised sensitivity’ for many people about the potential ethical and confidentiality dangers of biomedical research ‘without a counterbalancing, responsible story being told about the benefits’ of this research…’”
In emphasizing the theme of control
, a review at the Winnipeg Free Press
noted: “The courts have decided that once a bit of tissue is removed from our bodies, we lose all ownership rights and are not entitled to share in any profits derived. Even our own genes have been patented for private gain, preventing the development of cheaper and more effective methods to diagnose and treat disease as breast cancer"
The theme of accountability
is emphasized in an interview with Skloot published by the Atlanta Journal Constitution
. When asked if an individual’s tissue today could be used without consent, Skloot replies: “There are certain laws that say you have to be informed when scientists do certain things. What happened with Henrietta’s family, a scientist coming to them just to do research, they would have to have permission for that. But everything else is pretty loose
.” [emphasis added]
Finally, far less prominent themes included privacy
, public education
, or advocacy
with fewer than 15 percent of articles mentioning these important ethical considerations and very rarely as major points of emphasis. The theme of privacy
appears, for example, in a report on the PBS program Religion & Ethics Newsweekly which focused on the issue of tissue donation, quoting bioethicist Jonathon Moreno: “If you take some of my tissues, my cells, and do genetic analysis, you’re learning not just about me, but in some measure, at least, you’re learning about my relatives. So we have to be very sensitive to the prospects of stigmatization”
Education was addressed, for example, in a news story run by Reuters, though in cautionary terms: “As it is, Skloot said scientists fear logistical headaches if they start relinquishing control and giving out a lot of information to the general public. Patients may veto research projects involving their cells due to ethical qualms, for instance, or may demand revenues”
]. The theme of advocacy and activism, meanwhile, is used in the closing paragraph of a review of the book in the New York Times
: “The notion of ‘tissue rights’ has inspired a new category of activists. The question that comes up repeatedly is, if scientists or companies can commercialize a patient’s cells or tissues, doesn’t that patient, as provider of the raw material, deserve a say about it and maybe a share of any profits that result? Few people these days may be willing to take no for an answer”
, we examined the correlations among themes, an indicator of how themes might have been packaged together in discussion to offer a diagnostic (i.e. problem definition) and prescriptive (i.e. problem solution) account of the Lacks case or tissue research more generally. In this case, two distinct groupings of ethical themes appeared across articles. First, most prominently, discussion of consent, welfare, and compensation often appeared together in the same article, as indicated by their significant and positive correlations. Similarly, a focus on welfare and control also tended to appear together as themes in articles. This suggests that when describing the risks from biomedical research posed to vulnerable populations and individuals, that the themes of consent, compensation, and control tended to be discussed as remedies or courses of action.
Correlations among ethical themes
Second, though discussed much less frequently, an alternative diagnostic and prescriptive framing of tissue donation and research also appeared in articles. Specifically, accountability, education, and advocacy all correlate significantly and in the positive direction. Similarly, privacy correlates with accountability and education, though not with advocacy. This suggests that when issues related to accountability/oversight or privacy were raised as ethical concerns, the need for either public education or advocacy, or both, were also likely offered as solutions or courses of action.
Finally, we examined differences in the prominence of ethical themes by article/transcript type. Reviews (28.8%), stories/features (12.5%), and opinion articles (14%) were more likely than profiles/interviews (4.5%) to feature a major/lede focus on the welfare of the vulnerable as an ethical theme. Opinion articles (37.5%) were more likely than other article types to feature a major/lede focus on considerations of control, an ethical dimension that was otherwise rarely emphasized.