Study: patients back induced stem cells in drug dev if consent assured

The study, which was published in the January edition of the journal Stem Cell Stem​, tested the widely held belief that drug research conducted using iPSC is less likely to be the subject of patient ethical concerns than embryonic stem cells.

“Popular and professional discourse has suggested that the discovery of iPSC technology resolved the significant ethical and policy concerns surrounding human embryonic stem cells (hESCs) because deriving iPSCs does not involve the destruction of embryos​.”

However, according to the authors, while iPSCs may bypass concerns about the use of embryos in research and drug development, public opinion on the ethics of using induced stem cells for such work has yet to be determined.

“An important array of ethical concerns accompanies iPSC research and patients’ perspectives on these issues are wanting. Similarly, while informed consent plays a central role in research, and suggestions regarding the informed consent process for iPSC research have been offered, the opinions of patients regarding donation of biological materials for iPSC research are unclear​.”

Patient backing​

To try and clarify the situation the authors quizzed patients at the Johns Hopkins Hospital in Baltimore, US about potential issues associated with iPSC use – from the types of cells used through to issues of informed consent and intellectual property.

Generally, the respondents were positive according to the authors, who said that: “The most common reason participants were supportive of iPSC research was the desire to help others. Altruism was also the most frequent motivating factor for the willingness to provide tissue for iPSC research​.”

Concerns about iPSC use focused on issues related to privacy – on behalf of donors – with some expressing worries about the potential impact sharing their genetic information of de-anonymization would have on health insurance. 

HeLa hubub​

Others were worried about consent and cell immortalisation with several raising the creation of the famous HeLa line from cells taken from Henrietta Lacks’ cervical​ cancer tissue as a concern.

One said: “What if they're immortal? That's potentially a problem for me, because I'm not immortal. So by definition someone has use, ownership and usage, and access to those cells after I'm gone. And what comes to mind are HeLa cells. And how they were attained, and then there was—from a person, and how they were used, and are being used commercially. And that person obviously didn't give consent. She's not getting reimbursed. Her family and her descendants are not getting reimbursed from it.​

“So I like the idea, in theory, but as far as in the real world, especially since we live in a commercial society, I have great problems with it​.”

These issues aside, the authors concluded that use of iPSC in drug research was supported, explaining that: “Altruistic motivations…were a major theme in participants' positive attitudes toward iPSC research.

“As long as participants could be assured about proper consent and adherence to research regulations, they felt comfortable donating tissue for iPSC research to benefit society as a whole.​”

iPSCs vital​

The conclusions were welcomed by Dr Frances Rawle, Head of Corporate Governance and Policy at the UK Medical Research Council (MRC) who told BioPharma-Reporter.com iPSCs play an important role in disease research.

“Donated human tissue is vital to advance our understanding of health and disease through research. It is therefore very important that studies like this one are carried out to consult the public on this issue and ensure that ethical concerns are addressed so that any treatments developed using iPSCs are widely acceptable​.”

Dr Rawle added that: “Researchers are very conscious of the ethical issues surrounding the use of human tissue, and the particular challenges of securing informed consent for iPSC research and commercialisation are the subject of active debate within the academic community.​

“The MRC has produced some guidance for scientists seeking to use iPSCs for research, which stresses the importance of securing informed consent and ensuring that all donations are altruistic, anonymised and traceable​.”