Secret trial and insufficient public information
Secrecy was a strong and recurrent theme (Fig. 6a), and 29 (21%) of 139 articles contained statements about the trials being a secret. The initial Starr FM Online article of 21 May included the passage, “Investigations by Starr FM under-cover team have made public a clandestine attempt by authorities to use midwifery students at Hohoe in the Volta region for human experiment on the Ebola vaccine in a country with no Ebola case.” The CGIN press release brought greater attention to this article, and this specific passage is repeated in a total of 19 articles up until 8 June.
Descriptions of the trials as “secret” or “clandestine” were most prevalent in the first half of the controversy, but following Parliamentary discussions, this theme was superseded by the more restrained judgements that the trials had provided “insufficient information” to politicians and had failed to “sensitise” the general public. Trial representatives began responding in mid-June that information had been provided and sensitisation would be done.
This softer criticism, that the trials had provided “insufficient information,” appeared in 39 (28%) of the articles. In an article titled, “House orders ‘secret’ Ebola vaccination stopped,” MPs’ objections focused on a lack of consultation with politicians and the general public:
“(…) the Deputy Minister of Education, Samuel Okudzeto Ablakwa, said it was unacceptable for the ministry to carry out such a sensitive exercise without proper communication and sensitisation. He said the exercise (…) did not have political approval from the government, and appealed to his colleagues not to put the blame on the government.” (Ghanaian Times, 11.06).
Speaking before Parliament, Health Minister Alex Segbefia struck a contrite tone, admitting the need for better public engagement but asserting that approval had been sought from all the appropriate institutions:
“He said standard protocol had been followed prior to the approval for the vaccination to take place, but he conceded that despite the rigorous nature of the approval process, the stakeholder consultation that needed to have been done was not thorough enough.” (GhanaWeb, 16.06a).
In an interview published the following day, however, Susan Adu Amankwah (a researcher unaffiliated with either trial) ridiculed parliamentarians’ expectation of being personally consulted:
“The protocol of the trial had gone through the FDA … [in accordance with] the law that they [MPs] themselves passed – the Public Act 815 so the government knew about it. If the government is not represented by the FDA, if the state is not represented by the FDA, then I don’t know who the FDA is.” (GhanaWeb, 17.06b).
Even as new public education efforts got underway, the secrecy claim continued to reappear, such as when the NPP party Ashanti Regional Chairman used it to direct blame at Ghana’s president,
“… wondering how government, under the leadership of President John Dramani Mahama, could allow such an exercise to be conducted in his homeland, without the necessary education and approval.” (Ghanaian Chronicle, 22.06b).
In an article titled “When Scientists Become Too Secretive,” author Cameron Duodo was clearly unconvinced by the legalistic argument that the trials had received proper approval:
“… scientists of the Ghana Food and Drugs Authority (FDA) blithely authorised Ghanaian scientists, working for a foreign pharmaceutical company to carry out trials of an Ebola vaccine, without so much as a word to the Ghanaian public, to prepare their minds for the trials.” (Ghanaian Times, 30.06).
This narrative of an immoral experiment lent itself to historical comparisons, including the Tuskegee Syphilis Experiment (Modern Ghana 08.06), its Guatemalan counterpart (Ghanaian Chronicle, 25.06), and medical crimes perpetrated under the racist regimes of Nazi Germany and Apartheid South Africa (Ghanaian Times, 30.06). While such references were relatively sparse, Ghana’s colonial past is a recurring theme throughout the debate, particularly in the “incentives” issue.
Lastly, long after the peak of the debate, a key traditional leader in the Hohoe region professed his longstanding support for the trials, and his bemusement at the national controversy:
“The Paramount Chief of Gbi Traditional Area, Togbe Gabusu, … wondered why the Ebola vaccine trial should generate so much controversy. “I have never doubted this because when they [researchers] came, they called all the traditional heads. They met us talked to us and we were satisfied before the hullabaloo came. We have a Research Centre in town here, it has been here for [many] years…and they have been working. So why this?”, the Paramount Chief wondered.” (Modern Ghana, 17.07).
The idea that the trials were “secret” was initially propagated by the Starr FM Online article, in which local students described being approached about participating in an upcoming trial, and in which interviewees affiliated with the UHAS research centre “pleaded anonymity,” and insisted they “could not disclose” information. It seems likely that the interviewees were attempting to adhere to perfectly ordinary non-disclosure agreements, considering that the trials were still under review. This may have added an unintentionally conspiratorial air to their comments.
The Starr FM Online article also instigated the idea of secrecy by the mere fact that it was the first place where the trials were widely publicised. In the words of commentator Cameron Duodu,
“if you … try, even if metaphorically, to “smuggle” the project into the country, you will ensure that the first that is heard of it is through the news broadcast by a local radio station, then you are asking for trouble” (Ghanaian Times, 30.06).
The mere fact that the public was not aware of the trials lent credibility to the claims in the Starr FM Online article. Then again, the trials were forbidden to conduct any public education prior to receiving ethics approval, so its absence was not so much a mistake, but rather a vulnerability inherent in the established protocol for conducting research, which may need to be revised.
The fear that vaccine trials will bring Ebola
One of the most common critiques was that the vaccine trials would lead to Ebola cases in Ghana. Out of 139 articles in our dataset, 47 (33%) claimed that the vaccine would cause an Ebola outbreak in Ghana, while 27 articles (19%) said this would not happen. The critique came in two distinct forms: first, a suspicion that trial researchers would intentionally expose people to Ebola virus in order to test the vaccine, and second, a fear that the vaccine itself would cause participants to contract Ebola. Rebuttals included direct responses to both of these critiques, and overarching statements that the trials were safe and protocols had been followed. Figure 6b shows when each of the critiques appears, and when each is countered.
The claim is first mentioned in Starr FM Online (30.05), and is a direct quote from a press release issued by CGIN:
“Ebola outbreak, which is 100% sure to happen in Ghana should this human trials be allowed to go on, will be the greatest national security threat our country will ever face. The manufacturers of the so-called Ebola vaccine will look on till a larger number of Ghanaians are killed by the disease here in Ghana before the vaccine will be released and this would happen to make government buy the vaccine at any price…there is and will be no way by which Ghana can go through this Ebola virus human experiment without Ebola being spread country wide.” (Starr FM Online, 30.05).
Thus the original claim was that Ebola had to be introduced to be able to test the vaccine. After a fierce debate, in which the CGIN statement was referenced in the majority of the monitored newspapers, the first statements defending the trials found their way into the media more than a week later:
“The Food and Drugs Authority (FDA) has refuted claims that the impending Ebola vaccine trial in Ghana will harm persons who will be used as subjects for the exercise. ”(Starr FM Online, 08.06).
“According to FDA documents, the vaccines to be tested in Ghana are made using a common cold virus called an adenovirus that “does not make people sick”. The vaccines contain extracts that do not cause the disease from the Ebola virus.” (GhanaWeb, 09.06).
After the trials were suspended by the Minister of Health on 9 June (after being ordered to do so by Parliament) the debate continued and the GAAS issued a press statement on 12 June stating that it was “unsafe to undertake the trials in Ghana”. The statement included a list of ten technical questions, including:
“What assurances do we have that the chimpanzee-derived live adenovirus vector used in the GSK vaccine construct, although non-replicating for now, will remain dormant and not itself cause a disease to compromise the health of the people of Ghana?” (GhanaWeb, 15.06a).
Several writers demanded that “The World Health Organization Must Respond to the Queries of the Ghana Academy of Arts and Sciences,” (GhanaWeb, 27.06). On 26 June UHAS issued a press statement [19] rebutting the scientific questions point-by-point. Principal Investigator Professor Fred Binka also gave rebuttals in person at a sensitisation forum, and offered to undergo vaccination himself (Modern Ghana, 22.06). However, newspapers continued re-printing the GAAS critiques as late as 5 July, without acknowledging these rebuttals. Only one article reported on the UHAS response, and not until 8 July.
Moreover, the GAAS was portrayed as a mouthpiece of the people: “Ghanaians, through the Ghana Academy of Arts and Sciences (GAAS), have posed Ten Queries which WHO is required to take extremely seriously and reply to.” (GhanaWeb, 27.06), in contrast to portrayals of the Ghana FDA as “…a body grandiosely semi-labelling itself after an illustrious American name sake…” (GhanaWeb, 15.06).
So, it appears that the initial fear about scientists intentionally introducing Ebola was gradually replaced by the concern that the vaccine itself could cause disease, and this narrative became somewhat more scientifically sophisticated after the GAAS’ list of questions became a focal point. There were other passages, such as “The Ho West MP added that MPs from the region have been inundated with phone calls from panic-stricken constituents who believe that this trial is aimed at spreading the dreaded Ebola disease in the Volta Region. ”(GhanaWeb, 15.06b), that indicate a perception that people would be infected prior to vaccination. However, most quotes between 16-22 June are related to whether the adenovirus vector might mutate into a virulent form of the Ebola virus and infect trial participants.
Incentives
The debate around incentives was challenging to respond to: most complained that the incentives for trial participation were insufficient, but others simultaneously claimed they were inappropriately large, and in general the allegations made no distinction between the GSK trial (which was to offer participants money and a mobile phone) and the Janssen trial (which was not). The incentives were perceived as compensation for the trial’s dangers (as opposed to compensation for the cost of travel and time lost), and these dangers were thought to be great, leading to the conclusion that the incentives were too little. There were far fewer concerns about the incentives being coercively large compared with the many allegations that they were insultingly paltry. The claim that these incentives violated international standards for participant compensation, in some places attributed to WHO (see for instance GhanaWeb, 10.06d), added to the sense of insult. Rebuttals were issued to the effect that the incentives were for practical purposes (money for transport and phones for follow-up communication), but it is evident that the density of these rebuttals was sparser than that of the critiques.
The “incentives” theme appeared early in the debate peaking in the month of June (see Fig. 6c). It is one of the most frequent themes, with 49 of 139 articles (35%) mentioning it, and received relatively few rebuttals.
Incentives – 200 Ghanaian Cedis (GH₵)Footnote 5 and a mobile phone – were a target for extensive criticism, both from those who felt these were valuable enough to be coercive, and also from those who perceived the trials to be very risky and consequently viewed the incentives as insultingly small. Rebuttals included the clarification that phones were intended to facilitate communication between researchers and participants, and the money was to compensate participants for their time and transport.
As with secrecy, the topic of incentives is central in the initial Starr FM Online article:
“Documents cited by
Starrfmonline.com
indicate that the students have been promised [GH₵] 200 each and mobile phones.” They will also receive other compensations (…) “I’m really scared and a lot of my colleagues are apprehensive too,” a student confided in
Starrfmonline.com
. “Currently, they are compiling our names for the trial but we don’t know whether the vaccine is safe or not; whether we’ll contract the disease or otherwise. Nobody is explaining anything to us.” (Starr FM Online, 21.05).
The incentives are described neutrally, yet appear alongside fearful quotes. Similar references appeared in late May and early June, until the Volta office of the NDC party released a statement condemning the trials and portraying the incentives in a decidedly negative light:
“We are appealing to all Voltarians to remain calm and should not risk their lives for [GH₵] 200 and mobile phone,” a statement signed by the NDC regional chairman Kwadwo Gyapong, secretary Simon Amegashie-Viglo and regional organiser Henry Kojo Ametefee said. (Starr FM Online, 08.06a).
In an opinion piece published the following day, writer Michael Bokor issued a strong condemnation:
“Clearly, using Ghanaians as guinea pigs for this Ebola vaccine experiment is insulting and misguided. It is unethical, immoral, and despicable, especially if we consider what is being used as an inducement for participants.” (Modern Ghana, 09.06b).
Not all articles were so critical, and at least one correctly reported that the phone was provided “to facilitate communication and monitoring” (Modern Ghana, 10.06c).
When the issue was brought before Parliament, however, the Majority Chief Whip proposed “to invite the foreign pharmaceutical companies to do some explanations, because entering into a community and using mobile phones and [GHC] 200 to entice people for such a dangerous research is simply unacceptable.” (Ghanaian Times, 11.06). Harsh opinion articles followed, arguing both that “volunteers in other countries will not take less than US$2,000 or £1,000 per a single trial, in Ghana volunteers are being offered £40 ([GHC] 200) plus a cheap or substandard mobile (cell) phone likely to be of Chinese-made” (Modern Ghana, 12.06b), and also that that the incentives were coercively high and that participants:“… should not be influenced in their decision by psychological or financial pressures of any sort.” (Ghanaian Times, 16.06).
These contradictory criticisms presented an obvious challenge for defending the incentives. Early rebuttals focused on the practicality of the incentives:
“…the [GHC] 200.00 was supposed to cater for the transportation of the volunteers while the mobile phone was to help health personnel assess the health of the volunteers once the vaccine has been administered on them.” (Modern Ghana, 10.06b).
WHO country representative for Ghana Dr. Magda Rabalo managed to address the issue of the amount provided in the incentive package during a forum in Accra:
“…the ethics committee of trials said such moneys should not be too much or too little to manipulate people to volunteer… It also noted that WHO does not define how much participant should be paid and that compensations differ from country to country.” (Vibeghana (TV), 20.06).
Finally, several weeks later, an interview with Dr. Ama Kyerewaa Edwin, member of the Ghana Health Service Ethics Committee, clarified the actual compensation being given:
“... [participants] are not paid for volunteering but you will be compensated for your time and traveling in and out of the research Centre. … Persons who offer themselves for the Ebola vaccine trial in Ghana will be given a comprehensive international insurance cover against any unintended consequences,” (Starr FM Online, 08.07).
Limitations
This analysis only looks at English-language online media in a lower-middle-income country. It does not include print-only publications, radio or television broadcasts, and is therefore only analysing a subset of the media. However, we find few, if any, references in the online material to print-only sources.
In using these data to study a public debate, we assume that the timing and quantity of news coverage around a specific theme reflects the salience of that theme in the public consciousness. However, topics reported also reflect other factors, like editorial bias and preference for sensational stories.
As noted in the Results section, we make no attempt to draw conclusions from the aggregate amount of positive and negative themes observed in the dataset. A weighted analysis might account for the different number of positive and negative themes defined in the codebook. However, this would mask the fact that the themes do not measure discrete units of “positivity” and “negativity” but rather points and counterpoints in a narrative, which don’t combine additively. This may be an interesting subject for future research, nonetheless.
In our study we assume all articles to have equal influence. If the dataset were larger, it would be reasonable to attribute a weight based on the number of readers or geographic reach of a publication to estimate their potential influence.
Our analysis is based on manually coding themes. All coding was done using online tools, annotating the live data directly. Compared to traditional qualitative analysis, it is effective. However, it still means all articles matching specific keywords need to be read manually. Advancements in machine learning approaches might make it possible in the future to develop tools that will automate part of the coding in order to better provide real time monitoring to help health communication teams.