Rapid Ethical Assessment is an approach used to design context tailored consent process for voluntary participation of participants in research including human subjects. There is, however, limited evidence on the design of ethical assessment in studies targeting cancer patients in Ethiopia. REA was conducted to explore factors that influence the informed consent process among female cancer patients recruited for longitudinal research from Addis Ababa Population-based Cancer Registry. Qualitative study employing rapid ethnographic approach was conducted from May–July, 2017, at the Tikur (...) Anbessa Specialized Referral Hospital. In-depth and key informants’ interviews were conducted among purposively selected 16 participants. Regular de-briefings among the study team helped to identify emerging themes and ensure saturation. Interviews and debriefings were tape recorded in Amharic, and transcribed and translated to English. Coding of the transcripts was facilitated by use of NVivo software. Thematic analysis was employed to respond to the initial questions and interpret findings. Perceived barriers to voluntary study participation included lack of reporting back study results of previous studies, the decision making status of women, hopelessness or fatigue in the patients, shyness of the women, data collectors approach to the patient, and patient’s time constraints. Most of the patients preferred oral over written consent and face-to-face interview over telephone interview. Provision of detail information about the study, using short and understandable tool, competent, compassionate and respectful enumerators of the same gender were suggested to assure participation. Due to the perceived severity, the use of the term “cancer” was associated with fear and anxiety. Alternatively, uses of phrases like “breast or cervical illness/disease” were suggested during patient interviews. Voluntary participation is not straight forward but affected by different factors. Using competent, compassionate and respectful enumerators, short and precise questioning tools to limit the time of the interview could improve voluntary participation. Moreover, careful consideration of the patients and families concept of the disease such as wording and information has to be taken into account. This assessment helped in improving the consent process of the ongoing project on breast and cervical cancer patients. (shrink)

While the unprecedented lockdown measures were at the heart of the debate in the first year of the pandemic, the focus since then has shifted to vaccination issues. The reason, of course, is that vaccines and vaccinations have become available by now. All experts agree: If mankind had failed to develop vaccines against SARS-CoV-2, the death toll would have been much higher. This issue seeks to explore what could be described as a “generational approach to vaccinations”. The question “What can (...) we do to avoid future pandemics?” is related to different aspects of the failures and successes of humanity’s vaccination strategy against SARS-CoV-2. Pathogens are among the existential risks to humanity that could potentially kill a large part of it in a very short time. For all the tragedy and horror it has brought upon the world, the Corona virus has not been lethal on such a large, all-encompassing scale. But it could serve as a wake-up call for more and better prevention in the future, put differently: as a call to build a “preventive society”. When people look back to the year 2022 from the year 2200, will they think of the absence of mandatory vaccination as a dangerous anachronism? And will the unequal global distribution of vaccines be seen as an unbearable vice of our epoch? And will “human infection studies” still be dismissed as unethical if a dangerous new virus boards human bodies? If intergenerational justice means improving the life chances and living conditions of future generations to the largest possible extent, then its link to (the avoidance) of infectious diseases is obvious. We should protect future generations from foreseeable damage if we have the power to do so. “We” is humankind in its entirety. Politically, humanity is divided into many single nations. But biologically, as members of the same species, we share the same vulnerability regardless of ethnicity. The regular reader of this journal might wonder why this issue of IGJR has a different structure. An unprecedented pandemic calls for an unprecedented reaction and therefore IGJR 1/2021 and 2/2021 are special issues that deal with this disruptive event. We have invited several health experts, politicians and scholars alike to share their perspectives in short opinion pieces (instead of regular peer-reviewed articles). And we are exploring something new: the publication of a FRFG policy paper. This policy paper starts off with a historical overview on how pandemics have afflicted humanity in the past. It separates moral from legal duties and formulates “epidemiological imperatives” – the way of thinking of a responsible and solidary individual facing the task of preventing an outbreak of epidemics in a community. With the discovery of vaccines, and their availability, the catalogue of duties is increased by one more: to get the jabs as an act of solidarity with others, including future generations. This would prevent states from being forced to take disease control measures that bring about drastic collateral damage. During the first two years of the Corona pandemic, states have imposed lockdowns. The closure of schools has put a special burden on the youngest members of society. This could have been prevented during the second and the further waves. The policy paper also calls for more government funding for prophylactic vaccine research and for the designation of vaccines as “global public goods”. The issue then moves on to a section dedicated to opinion papers by various different authors. The first paper, written by Agnes Binagwaho and Kedest Mathewos (both from University of Global Health Equity, Rwanda), focuses on the issue of health inequity, a concern which has gained more and more traction during the Covid-19 pandemic. The paper examines how vaccine distribution during the pandemic was mainly focused on the global north and how such actions might affect future generations’ perception of what is just, fair and morally correct. The second paper, by Samantha Vanderslott (University of Oxford), focuses on the right and wrongdoings connected to pandemic preparedness and response. The third paper, authored by Rajeev Sadanandan (Health Systems Transformation Platform, India), talks about the lessons that can and should be drawn from child immunisations. The fourth paper, by Adriano Mannino (LMU and Parmenides Foundation, Munich), delves into the question how future generations will assess our actions and our response to the current pandemic. The fifth and final paper, written by Jörg Tremmel (FRFG and University Tübingen), is centered around the question whether human infection studies could have been implemented during the early stages of the pandemic to minimise deaths and severe infections. The issue concludes with two reviews on recent books by Alberto Giubilini and Katie Wright. In his review of Giubilini’s The Ethics of Vaccination, Marius Kunte notes that it contains a “thought-provoking plea” for individual, collective and institutional obligations to reach high vaccination rates. Judith Kausch-Zongo concludes her review of Wright’s Gender, Migration and the Intergenerational Transfer of Human Wellbeing with a special emphasis on the book’s empirical findings, and praises it in its entirety as “undoubtedly important”. Both books serve as poignant reminders of how sustainable societies can only emerge once the challenges revolving around its most vulnerable members have been properly addressed. (shrink)