Academic interests
- Philosophy of medicine
- Foundational problems in medical ethics
- Research ethics and science ethics
- Bioethics and new emerging technologies
- Bioethics and (human) development
- Bioethics and human rights
- Bioethics and public policy making
- Biopolitics
- Bioethics and global health
- Bioethics and the arts
- Bioethics, ancient philosophy and literature
Courses taught
- Two e-learning courses in ethics:
Positions held
- Professor in medical ethics, Center for Medical Ethics, Faculty of Medicine, University of Oslo, 01.09.96-
- Adjunct Professor, Philosophy of medicine and medical ethics, Centre for International Health, Faculty of Medicine, University of Bergen, 15.02.96-31.03.11
- Chief of Bioethics, UNESCO, Paris, 15.02.07-15.08.08
- Head of Centre for medical ethics, Faculty of Medicine, University of Oslo, 01.09.96-14.02.07
- Secretary, Council of Medical Sciences’ Ethics Committee, 15.06.87-14.06.90
- Head of Secretariat, The National Committee for Medical and Health Research Ethics (NEM), 15.06.90-31.08.96
- Dr. philos, University of Oslo (Ancient Greek philosophy), September 1993
- PhD research fellow (Norwegian Research Council) 1988-89
- ThM (Protestant theology), University of Oslo, June 1989
- MD, University of Oslo, December 1987
- Student research fellowship, medical ethics, 1987-88
- Student research fellowship, theology (the French Government),15.10.85-15.07.86, University of Strasbourg, France
- Student research fellowship, theology, 1.01.84-31.12.84, Maison Albert Schweitzer, Gunsbach, France
- Studies in Chemistry and Mathematics, Norges Lærerhøyskole, Trondheim, August 1976-June 1978
CV Jan Helge Solbakk - 2024 (pdf)
Membership of national and international advisory boards and scientific committees
- 2016-:Member of the Editorial Board of Medicine, Health Care and Philosophy.
- 2016-: Member of the Editorial Board of La Revista Brasilera de Bioética.
- 2012-: Member of the International Advisory Board of Revista Redbioética, UNESCO .
- 2012-: Member of the Editorial Board of the International Journal of Ethics Education.
- 2006-2010: Member of an Ethics Review Committee set up by the European and Developing Countries Clinical Trial Partnership.
- 2010–2013: Chair of International Society of Stem Cell Research’s (ISSCR) Ethics and Public Policy Committee, member in 2007 and from January 2009-June 2010.
- 2008-2009: Member of a round table set up by the European Commission to issue a report on nanomedicine, Nano Med – a report on the nanomedicine environment, Brussels 2010.
- 2007–2011: Member of the Biomedical Ethics Funding Committee of the Wellcome Trust, London, UK.
- 2006–2007: Member of an International task force on Human Embryonic Stem Cell Research Guidelines set up by the International Society of Stem Cell Research (ISSCR).
- 2002–2004: Member of an Expert STRATA Group set up by the European Commission to issue a report on Ethical, legal and social aspects of genetic testing: research development and clinical applications, Brussels 2004.
- 2000: Member of a consensus panel on Treatment of depression in general practice, set up by The Norwegian Research Council: Behandling av depresjon i allmennpraksis [Treatment of depression in general practice]. Consensus report nr. 14 , Norwegian Research Council, 2000].
- 2000: Member of an expert group set up by The Norwegian Health Technology Assessment Authorities to issue a report on Genetic therapy: Genterapi. Status og fremtidige muligheter innen klinisk medisin [Gene therapy. Status, future possibilities in clinical medicine, Oslo 2000].
- 1999-2004: Member of The Norwegian Biotechnology Advisory Board.
- 1998–2003: Member of a working party set up by the Council of Europe to provide a protocol for the chapter on medical genetics of the Convention of Biomedicine and Human Rights.
- 1999-2000: Chairman of an ad hoc committee set up by the Norwegian Health Ministry to issue a report on stem cell research and development: Stamceller fra aborterte fostre og befruktede egg – medisinsk forskning, klinisk anvendelse og mulige alternativer [Stemcells from aborted fetuses and fertilized eggs – medical research, clinical application and possible alternatives], Oslo 2000].
- 1992-2003: Member of the Norwegian Medical Associations Committee on Human Rights.
- 1993-1998: Member of the Executive Committee of The Council for International Organizations of Medical Sciences (CIOMS), Geneva, Switzerland.
Publications
- Solbakk, J.H. (2021). Bio(po)ethics – didactic inspirations In: C. Mounsey and M. Mant (Eds.). You've Got to Be Carefully Taught: Bioethics and Education. Routledge: 147-184.
- Solbakk, J.H., Bentzen, H.B, Holm, S., et al. (2021). Back to WHAT? The role of research ethics in pandemic times. Medicine, Health Care and Philosophy; 24:3–20.
- Solbakk, J.H (2018). You Can’t Go Home Again - on the conceptualization of disasters in ancient Greek tragedy. In: D. O’Mathuna, V. Dranseika and B. Gordijn (Eds.). Core Concepts and Ethical Theories, Advancing Global Bioethics 11. Dordrecht: Springer: 87-104.
- Solbakk, J.H. (2018). You Can’t Go Home Again – bioethical and didactic reflections on the fate of women and children in armed conflicts. In: H ten Have (Ed.). Global Education in Bioethics. Dordrecht: Springer:119-151.
- Solbakk J.H. Development and Bioethics (2015). In: H. ten Have (Ed.). Encyclopedia of Global Bioethics. Dordrecht: Springer: 140-1.
- Solbakk J.H. (2015). What is it to do good medical ethics? On the concepts of ‘good’ and ‘goodness’ in medical ethics. Journal of Medical Ethics; 41:12–16.
- Solbakk, J.H. Movements and Movies in Bioethics: The Use of Theatre and Cinema in Teaching Bioethics (2014). In: Henk ten Have (Ed.). Bioethics Education in a Global Perspective, Advancing Global Bioethics 4. Dordrecht: Springer: 203-221.
- Solbakk, J.H. (2014). The whole and the art of medical dialectic: a platonic account. Medicine Health Care and Philosophy: 1; 17:39–52.
- Solbakk, J.H. (2013). Bioethics on the couch. Cambridge Quarterly of Health Care Ethics; 22: 319–327.
- Solbakk JH, Zoloth L. (2011). The Tragedy of Translation:The Case of ‘‘First Use’’in Human Embryonic Stem Cell Research. Cell Stem Cell; 8: 479-48.
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Kuhumba, Shija Kevin; Molewijk, Albert Christiaan; Solbakk, Jan Helge; Mhando, Nandera Ernest & Sævareid, Trygve Johannes Lereim
(2024).
Moral challenges and understanding of clinical ethics in
Tanzanian hospitals: Perspectives of healthcare professionals.
Developing World Bioethics.
ISSN 1471-8731.
doi:
10.1111/dewb.12467.
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Healthcare professionals encounter many moral challenges in their daily clinical practice. However, there have been few studies on the subject matter in Tanzania. This study aims to provide an account of moral challenges faced by healthcare professionals in Tanzanian hospitals, their understanding of clinical ethics, and the ethics education they have received. Many participants reported receiving some kind of ethics training through formal education and on-the-job training. Some participants understood ethics in healthcare settings as adherence to established laws, regulations, guidelines, procedures, norms, and rules essential in clinical practice. Analysis of the data identified four themes of moral challenges. These challenges are related to 1) decision-making and communication in clinical practice, 2) scarcity of medical resources and prioritization in clinical practice, 3) withdrawal of curative treatment, and 4) conflicts between professional judgment, religious convictions and adherence to alternative
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Dawkins, Shereen Cox Née; Solbakk, Jan Helge; Luthardt, Frederick & Bernabe, Rosemarie de La Cruz
(2023).
Institutional Review Boards and post-approval monitoring (PAM) of human research: content analysis of select university (academic health center) web pages across the USA.
Current Medical Research and Opinion.
ISSN 0300-7995.
39(3),
p. 341–350.
doi:
10.1080/03007995.2023.2175999.
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Objective:
To conduct a content analysis of IRB webpages of select universities (academic health centers) in the USA that describe post IRB- approval monitoring activities.
Method:
This was a qualitative study. Thematic analysis was the method to review the webpage content of selected academic health centers (AHC) within the USA.
Results:
Some US academic health “centers” IRB administrative or research compliance offices conduct post- approval monitoring (PAM) of human subjects’ research including clinical trials. The goals of this PAM programmes are to (a) ensure compliance to approved protocols, (b) preserve research integrity, (c) manage institutional risks, d) provide advisory/educational support to researchers, (e) recommend corrective actions for identified issues, and most importantly, (f) to protect the safety, rights, and well-being of research participants. Although not a requirement by law, the PAM program has legislative support in the US Code of Federal Regulations as part of the US Office for Human Research Protection’s (OHRP) Federal Wide Assurance (FWA). This is especially for institutions that conduct studies funded by the Federal government. PAM on-site checks reveal various incidents of protocol deviations and violations. This includes issues with recruitment processes, informed consent discrepancies, and incidents of non-compliance. When a study protocol is identified as non-compliant, the principal investigator works with the PAM monitor to develop a corrective action plan that would allow the study to become compliant and avoid sanctions from the IRB or the regulatory authority.
Conclusions:
REC/IRB post-approval monitoring of clinical trials is a valuable mechanism of protection for research participants while giving educational and quality assurance support to researchers. The program enables early detection and resolution of non-compliance to approved protocols. The impact of the program in the USA requires further exploration.
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Dawkins, Shereen Cox Née; Solbakk, Jan Helge & Bernabe, Rosemarie de La Cruz
(2022).
Research ethics committees and post-approval activities: a qualitative study on the perspectives of European research ethics committee representatives.
Current Medical Research and Opinion.
ISSN 0300-7995.
p. 1–10.
doi:
10.1080/03007995.2022.2115773.
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Objective: To explore the views of Research Ethics Committee (REC) representatives in the European
Union (EU) on what the status quo is in terms of RECs’ activities after the approval of trial protocols
for clinical studies.
Method: This is a qualitative study. The participants in this study are members or representatives of a
research ethics committee from the member countries of the European Network of Research Ethics
Committees (EUREC) and the United Kingdom. Thematic analysis was the method to assess interview
transcripts.
Results: Interviews of REC representatives from 19 countries across Europe reveals that REC postapproval
activities are predominantly limited to review and approval of protocol amendments. The
majority of the RECs do not have mandatory continuing reviews or receipt of notifications of adverse
events or protocol violations. In fact, most post-approval activities are the remit of the regulatory authorities.
The interviewed members were also of the opinion that RECs in the EU do not have the legislative
support, the organizational structure, the expert staff nor time to do active post approval follow-up.
Conclusions: Post-approval follow-up activities for clinical studies by RECs is a valuable resource and
means for early detection and resolution of protocol deviations and violations. However, a majority of
RECs within Europe do not have active post-approval follow-up of approved protocols. The interviews
revealed that resource challenges such as time, personnel, and organizational structure contribute to
the lack of follow-up by RECs. Some RECs in the represented countries do not identify post-approval
follow-up as part of their mandate but instead place emphasis on the culture of trust between the
RECs and researchers. Current EU Regulations do not directly address the role of the REC after the
approval of clinical trials.
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Dawkins, Shereen Cox Née; Solbakk, Jan Helge & Bernabe, Rosemarie de la Cruz
(2021).
The role of research ethics committees after the approval of clinical trial protocols in the EU and the USA: a descriptive content analysis of international and regional normative documents.
Current Medical Research and Opinion.
ISSN 0300-7995.
37(6),
p. 1061–1069.
doi:
10.1080/03007995.2021.1905621.
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Aim: To conduct a descriptive content analysis of normative documents on the role of research ethics committees (RECs) after the approval of clinical trial protocols. The question to be addressed is whether and to what extent normative documents support a monitoring role for RECs in the United States and the European Union. Design: A qualitative content analysis of 19 normative documents on clinical research as outlined by the International Compilation of Human Research Standards 2020 edition and other related documents for the EU and USA. Results: After the approval of research protocols, RECs’ general role is to receive reports from researchers on the trials’ progress. Additionally, RECs receive notifications of protocol amendments, deviations and, to a lesser extent, violations, which is the remit of the regulatory/competent authorities. RECs are expected to issue opinions on clinical trials’ progress and give supplemental opinions/approval or withdraw/suspend/terminate previous favorable opinions on adverse events or safety concerns that may arise. RECs are to receive an end of the trial report. Conclusion: The role of RECs post approval of protocols is to protect human participants through activities such as continuing review of: (a) progress reports, (b) notifications of significant protocol amendments, (c) adverse events, (d) protocol deviations, and (e) protocol violations. Although some international guidelines such as the Declaration of Helsinki emphasize the right to monitor, RECs’ predominant activity is document review. In the USA, RECs are authorized to issue approvals and terminate/suspend previously issued approvals. However, in the EU, the approach is to relegate to member states to decide the extent of legislative power they wish to give to the RECs. The REC’s opinion on the end of trial report is identified as an area for further exploration.
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Ewnetu, Demelash Bezabih; Thorsen, Viva Combs; Solbakk, Jan Helge & Magelssen, Morten
(2021).
Navigating abortion law dilemmas: experiences and attitudes among Ethiopian health care professionals.
BMC Medical Ethics.
22(1).
doi:
10.1186/s12910-021-00735-y.
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Background Ethiopia’s 2005 abortion law improved access to legal abortion. In this study we examine the experiences of abortion providers with the revised abortion law, including how they view and resolve perceived moral challenges. Methods Thirty healthcare professionals involved in abortion provisions in Addis Ababa were interviewed. Transcripts were analyzed using systematic text condensation, a qualitative analysis framework. Results Most participants considered the 2005 abortion law a clear improvement—yet it does not solve all problems and has led to new dilemmas. As a main finding, the law appears to have opened a large space for professionals’ individual interpretation and discretion concerning whether criteria for abortion are met or not. Regarding abortion for fetal abnormalities, participants support the woman’s authority in deciding whether to choose abortion or not, although several saw these decisions as moral dilemmas. All thought that abortion was a justified choice when a diagnosis of fetal abnormality had been made. Conclusion Ethiopian practitioners experience moral dilemmas in connection with abortion. The law places significant authority, burden and responsibility on each practitioner.
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Ewnetu, Demelash Bezabih; Thorsen, Viva Combs; Solbakk, Jan Helge & Magelssen, Morten
(2020).
Still a moral dilemma: How Ethiopian professionals providing abortion come to terms with conflicting norms and demands.
BMC Medical Ethics.
21(1),
p. 1–7.
doi:
10.1186/s12910-020-0458-7.
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Background
The Ethiopian law on abortion was liberalized in 2005. However, as a strongly religious country, the new law has remained controversial from the outset. Many abortion providers have religious allegiances, which begs the question how to negotiate the conflicting demands of their jobs and their commitment to their patients on the one hand, and their religious convictions and moral values on the other. Method
A qualitative study based on in-depth interviews with 30 healthcare professionals involved in abortion services in either private/non-governmental clinics or in public hospitals in Addis Ababa, Ethiopia. Transcripts were analyzed using systematic text condensation, a qualitative analysis framework. Results
For the participants, religious norms and the view that the early fetus has a moral right to life count against providing abortion; while the interests and needs of the pregnant woman supports providing abortion services. The professionals weighed these value considerations differently and reached different conclusions. One group appears to have experienced genuine conflicts of conscience, while another group attempted to reconcile religious norms and values with their work, especially through framing provision of abortion as helping and preventing harm and suffering. The professionals handle this moral balancing act on their own. In general, participants working in the private sector reported less moral dilemma with abortion than did their colleagues from public hospitals. Conclusions
This study highlights the difficulties in reconciling tensions between religious convictions and moral norms and values, and professional duties. Such insights might inform guidelines and healthcare ethics education.
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Lemmo, Daniela; Martino, Maria Luisa; Cesaro, Adele Nunziante & Solbakk, Jan Helge
(2020).
Idiosyncratic ambivalence: A three-dimensional interpretative model to understand the non-adhesion of women to breast and cervical cancer screening.
Mediterranean Journal of Clinical Psychology (MJCP).
8(3).
doi:
10.6092/2282-1619/mjcp-2563.
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Solbakk, Jan Helge; Bentzen, Heidi Beate; Holm, Søren; Heggestad, Anne Kari Tolo; Hofmann, Bjørn Morten & Robertsen, Annette
[Show all 10 contributors for this article]
(2020).
Back to WHAT? The role of research ethics in pandemic times.
Medicine, Health care and Philosophy.
ISSN 1386-7423.
p. 1–16.
doi:
10.1007/s11019-020-09984-x.
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The Covid-19 pandemic creates an unprecedented threatening situation worldwide with an urgent need for critical reflection and new knowledge production, but also a need for imminent action despite prevailing knowledge gaps and multilevel uncertainty. With regard to the role of research ethics in these pandemic times some argue in favor of exceptionalism, others, including the authors of this paper, emphasize the urgent need to remain committed to core ethical principles and fundamental human rights obligations all reflected in research regulations and guidelines carefully crafted over time. In this paper we disentangle some of the arguments put forward in the ongoing debate about Covid-19 human challenge studies (CHIs) and the concomitant role of health-related research ethics in pandemic times. We suggest it might be helpful to think through a lens differentiating between risk, strict uncertainty and ignorance. We provide some examples of lessons learned by harm done in the name of research in the past and discuss the relevance of this legacy in the current situation.
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Solbakk, Jan Helge
(2019).
Poetikk i praksis: Om det tragiske og komiske i medisinen.
Filosofisk supplement.
ISSN 0809-8220.
15(1),
p. 56–65.
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Paranhos, Flávio R. L; Garrafa, Volnei & Solbakk, Jan Helge
(2019).
The Theory of Common Morality of Bernard Gert.
Revista Brasileira de Bioética (RBB).
ISSN 1984-1760.
15(1),
p. 1–14.
doi:
10.26512/rbb.v15i1.26866.
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Tom L. Beauchamp and James F. Childress have been increasingly using a moral theory known as “Theory of Common Morality” as a philosophical basis for their four principle approach to biomedical ethics, currently known as principlism. In the latest edition (2013) of their Principles of Biomedical Ethics, they acknowledge the contribution of some previous theorists of common morality. Bernard Gert, a critic of principlism, is one of them. The aim of this paper is to provide a critical analysis of Gert’s Theory of Common Morality, as developed in his book Common Morality. Deciding What to Do (2004). According to Gert, common morality is a moral system that everyone uses implicitly when making decisions and judgments. This system consists, basically, of moral rules, moral ideals and a two-step procedure used intuitively by every person to decide whether a given violation of a rule or ideal is legitimate. There are ten moral rules, which can be collapsed into two basic ones, Do not cause harm (Do not kill; Do not cause pain; Do not disable; Do not deprive of freedom; Do not deprive of pleasure), and Do not violate the trust (Do not deceive; Keep your promises; Do not cheat; Obey the law; Do your duty). Moral rules apply to moral agents, which are constituted by all humans able to fully understand the moral rules, as well as predict the consequences of their eventual violation. It is our understanding that, despite the highly intuitive appeal of Gert’s approach, as well as of Beauchamp and Childress’s, the Theory of Common Morality has some fundamental flaws which are discussed in the article.
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Solbakk, Jan Helge
(2018).
You Can't Go Home Again: On the Conceptualization of Disasters in Ancient Greek Tragedy.
In O'Mathúna, Dónal P.; Dranseika, Vilius & Gordijn, Bert (Ed.),
Disasters: Core Concepts and Ethical Theories.
Springer Nature.
ISSN 9783319927213.
p. 87–104.
doi:
10.1007/978-3-319-92722-0.
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The ancient Greek tragedy represents one of the earliest and most dramatic ways of dealing with the phenomenon of disaster in literature. This ancient literary form will be used as a kind of template in the search for recurrent forms of moral attitudes and behaviour that seem to follow almost universally in the wake of war and armed conflicts. First, the focus will be on war veterans’ experiences and narratives of going home again, i.e. of returning from combat back to a life called ‘normal’. These are experiences that render both the victorious and the defeated representatives of such conflicts extremely vulnerable and susceptible to harm, as dramatically displayed in Sophocles’ tragedy Ajax. Second, Euripides’ plays Andromache, Hecuba and The Trojan women will be made use of. In these plays, unvarnished versions of the horrors women and children are subjected to as a consequence of war are dramatically displayed. To demonstrate the moral timelessness and didactic potentials of these ancient representations, the fate of war veterans, women and children in the wake of modern wars and armed conflicts will then be displayed through Bryan Doerries’ narrative, Theater of war, of exposing US war veterans to Sophocles play Ajax, and through the narratives of 50 Syrian women, all refugees living in Aman, Jordan because of the civil war in Syria, of staging Euripides’ play The Trojan women.
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Castillo, Camilo Hernan Manchola & Solbakk, Jan Helge
(2017).
Bioethics and imagination: Towards a narrative bioethics committed to social action and justice.
Medical Humanities.
ISSN 1468-215X.
43(3),
p. 166–171.
doi:
10.1136/medhum-2016-011079.
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Allon, Irit; Ben-Yehudah, Ahmi; Dekel, Raz; Solbakk, Jan Helge; Weltring, Klaus-Michael & Siegal, Gil
(2016).
Ethical issues in nanomedicine: Tempest in a teapot?
Medicine, Health care and Philosophy.
ISSN 1386-7423.
20(1),
p. 3–11.
doi:
10.1007/s11019-016-9720-7.
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Solbakk, Jan Helge
(2014).
Lost in delusion: Reflections on the Article: “The 50th Anniversary of the Declaration of Helsinki. Progress but Many Remaining Challenges”.
Revista Redbioética.
5(1),
p. 79–86.
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Solbakk, Jan Helge
(2013).
Norway.
In Have, A.M.J., ten & Gordin, B (Ed.),
Handbook of Global Bioethics.
Springer Science+Business Media B.V..
ISSN 9789400725126.
p. 1347–1367.
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Solbakk, Jan Helge & Vidal, Susana Maria
(2013).
Clinical Research in Resource-poor Settings.
In Have, A.M.J., ten & Gordin, B (Ed.),
Handbook of Global Bioethics.
Springer Science+Business Media B.V..
ISSN 9789400725126.
p. 527–550.
doi:
10.1007/978-94-007-2512-6_102.
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Solbakk, Jan Helge
(2013).
Over ævne: Etikkens rolle i møte med hat, raseri og ekstreme handlinger.
In Jupskås, Anders Ravik & Jupskås, Anders Ravik (Ed.),
Akademiske perspektiver på 22. juli.
Akademisk Forlag.
ISSN 9788232101313.
p. 145–160.
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Solbakk, Jan Helge
(2012).
Bio(po)ética: De la tragedia griega a la narrativa cinematográfica.
In Farina, Juan Jorge Michel & Solbakk, Jan Helge (Ed.),
(Bio)ética y cine: Tragedia griega y acontecimiento del cuerpo.
Letra Viva.
ISSN 9789506493639.
p. 41–78.
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Solbakk, Jan Helge; Cox, Shereen; Bernabe, Rosemarie de la Cruz & Suarez, Susana Maria Vidal
(2021).
Covid 19, Comedy and Crimes against Humanity.
Uniforum.
ISSN 1891-5825.
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Solbakk, Jan Helge
(2021).
Bio(po)ethics - didactic inspirations.
In Mant, Madeleine & Mounsey, Chris (Ed.),
The History and Bioethics of Medical Education.
Routledge.
ISSN 9780367619350.
p. 147–184.
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Solbakk, Jan Helge; Bernabe, Rosemarie de la Cruz & Cox, Shereen
(2020).
Kynisk svar om TRIPS.
Klassekampen.
ISSN 0805-3839.
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Vogt, Henrik; Solbakk, Jan Helge & Hofmann, Bjørn Morten
(2019).
The precision paradox in personalized medicine: How can uncertainty be reduced when statistics do not apply?
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Magelssen, Morten; Oftestad, Eivor Andersen & Solbakk, Jan Helge
(2018).
Abortlov uten diskriminering.
Vårt land.
ISSN 0805-5424.
p. 14–15.
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Solbakk, Jan Helge; Sundin, Maj-Len; Fisknes, Ole Hermann & Slettebø, Haldor
(2015).
Vetoretten til dei pårørande bør avgrensast.
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Ljøsne, Isabelle Budin; Bentzen, Heidi Beate; Solbakk, Jan Helge & Myklebost, Ola
(2015).
Genomsekvensering i forskning krever ny tilnærming til samtykke.
Tidsskrift for Den norske legeforening (Tidsskriftet).
ISSN 0029-2001.
135(22),
p. 2031–2032.
doi:
10.4045/tidsskr.15.0944.
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Rommetveit, Kjetil & Solbakk, Jan Helge
(2013).
Hvem tjener på den genetiske nypaternalismen?
Morgenbladet.
ISSN 0805-3847.
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Solbakk, Jan Helge
(2013).
Bør en terrorist få lov til å utdanne seg?
Aftenposten (morgenutg. : trykt utg.).
ISSN 0804-3116.
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Solbakk, Jan Helge
(2013).
Blinde flekker i omskjæringsdebatten.
Aftenposten (morgenutg. : trykt utg.).
ISSN 0804-3116.
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Magelssen, Morten & Solbakk, Jan Helge
(2013).
Tilslørende om ultralyd.
Aftenposten (morgenutg. : trykt utg.).
ISSN 0804-3116.
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Solbakk, Jan Helge
(2013).
Hva mener Jonas og Jens med "FELLES ANSVAR"?
Legekunsten.
ISSN 0804-1717.
23(2),
p. 48–49.
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Ljøsne, Isabelle Budin; Solbakk, Jan Helge; Harris, Jennifer Ruth & Myklebost, Ola
(2018).
Bringing personalized medicine to people.
Universitetet i Oslo.
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Many financial, organizational, regulatory, ethical and societal challenges may hinder or delay the provision of personalized medicine (PM) to people. PM aims to adapt prevention, diagnosis and treatment to the molecular and genetic characteristics of the individual patient and her disease. The overarching aim of the thesis was to explore the views of researchers, representatives from patient organizations, and policymakers regarding potential challenges to the provision of PM to people. The researchers explained that they often do not have the necessary resources to feedback individual genetic research results to research participants when such results could have been useful in health care settings to provide more targeted care. To this adds the lack of a regulatory framework to provide results in a sustainable manner. Better solutions are also needed to communicate with research participants and manage informed consent. The representatives from patient organizations were supportive of PM but expressed concerns regarding its cost; they feared that PM might be available only to the socio-economically advantaged. They believed that health care professionals and patients have insufficient knowledge of genetics to endorse PM and questioned whether the majority of patients would be able to take greater responsibility for their health. This contrasts with the views of policymakers who view patients and citizens as highly health literate and actively engaged in their own health care. Researchers and representatives from patient organizations proposed several strategies to help address these challenges. Strategies include the design of harmonized guidelines for the feedback of genetic research results to research participants, the development and implementation of dynamic consent procedures, increased education of patients and health care professionals in PM, and the development of sustainable funding mechanisms for PM.
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Published
Apr. 13, 2011 2:45 PM
- Last modified
Mar. 21, 2024 12:05 PM