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Autonomy and Fear of Synthetic Biology: How Can Patients’ Autonomy Be Enhanced in the Field of Synthetic Biology? A Qualitative Study with Stable Patients

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Abstract

We analyzed stable patients’ views regarding synthetic biology in general, the medical application of synthetic biology, and their potential participation in trials of synthetic biology in particular. The aim of the study was to find out whether patients’ views and preferences change after receiving more detailed information about synthetic biology and its clinical applications. The qualitative study was carried out with a purposive sample of 36 stable patients, who suffered from diabetes or gout. Interviews were transcribed verbatim, translated and fully anonymized. Thematic analysis was applied in order to examine stable patients’ attitudes towards synthetic biology, its medical application, and their participation in trials. When patients were asked about synthetic biology in general, most of them were anxious that something uncontrollable could be created. After a concrete example of possible future treatment options, patients started to see synthetic biology in a more positive way. Our study constitutes an important first empirical insight into stable patients’ views on synthetic biology and into the kind of fears triggered by the term “synthetic biology.” Our results show that clear and concrete information can change patients’ initial negative feelings towards synthetic biology. Information should thus be transmitted with great accuracy and transparency in order to reduce irrational fears of patients and to minimize the risk that researchers present facts too positively for the purposes of persuading patients to participate in clinical trials. Potential participants need to be adequately informed in order to be able to autonomously decide whether to participate in human subject research involving synthetic biology.

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Acknowledgments

The authors would like to thank Anna Genske for developing and adapting the interview guide. Furthermore, we would like to thank Marianne Weber for transcribing and translating the interviews with the 36 gout and diabetes patients.

Funding

The research was funded by the Swiss National Science Foundation (SNF) [grant no. PDFMP3_137194/1].

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Authors and Affiliations

  1. Institute for Biomedical Ethics, University of Basel, Basel, Switzerland

    Milenko Rakic, Isabelle Wienand, David Shaw, Rebecca Nast & Bernice S. Elger

Authors
  1. Milenko Rakic
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  2. Isabelle Wienand
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  3. David Shaw
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  4. Rebecca Nast
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  5. Bernice S. Elger
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Corresponding author

Correspondence to Milenko Rakic.

Appendix

Appendix

Hypothetical Example for Gout Patients

I will guide you into Mr. Müller’s world in the year 2025. Mr. Müller suffers, as you, from gout, but he is not taking any drugs. He needs to go rarely to his GP to get his uric acid level controlled. Mr. Müller has a capsule implanted under his skin. This capsule contains human cells. These cells are from Mr. Müller himself. They were removed and modified in the laboratory.

These modified cells from Mr. Müller are able to produce a certain protein that removes the surplus uric acid in the blood. Additionally, a sensor was integrated that constantly measures the uric acid levels in the blood. If it [uric acid level] increases too strongly, the protein production is stimulated. She [cell] produces more of the uric acid degrading protein. Mr. Müller notices nothing of this. Everything happens automatically and alone.

Hypothetical Example for Diabetes Patients

I will guide you into Mr. Müller’s world in the year 2025. Mr. Müller suffers, as you, from diabetes. Mr. Müller has a capsule implanted under his skin. This capsule contains human cells. These cells are from Mr. Müller himself. They were removed and modified in the laboratory.

These modified cells from Mr. Müller are able to produce a certain substance that stimulates the insulin production in the body and decreases the blood sugar concentration. Mr. Müller is wearing a plaster with incorporated LED-lamps on his skin. After food intake, Mr. Müller switches the LED-lamps on via touch of a button. The light ensures that the substance gets produced in the cells and distributed in the blood.

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Rakic, M., Wienand, I., Shaw, D. et al. Autonomy and Fear of Synthetic Biology: How Can Patients’ Autonomy Be Enhanced in the Field of Synthetic Biology? A Qualitative Study with Stable Patients. Sci Eng Ethics 23, 375–388 (2017). https://doi.org/10.1007/s11948-016-9786-x

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