Loading

Towards “Collaborative Ethics” for Translational Medical Research Teams

Review Article | Open Access

  • 1. Department of Clinical Research and Leadership and Department of Health Policy, George Washington University, USA
+ Show More - Show Less
Corresponding Authors
Leadership and Department of Health Policy, George Washington University, P.O. Box, 2872, Washington, DC 20013, USA, Tel: 202-246-0851;
Abstract

An increasing focus of public and private funders of medical research is to promote collaborative research teams that translate research findings into community health improvement. Unique collaborative translational research teams are developed to meet this demand from funders and adequately address the complex health needs of diverse communities. These interdisciplinary teams bring together highly educated individuals with varied ethical training and perceptions of the role of ethics in research. This diverse ethical thinking within the collaborative team sets the stage for unique ethical challenges that are faced by collaborative translational research teams. In this aricle we offer a literature review of key ethical issues that may arise for these collaborative teams that may prevent them from succeeding – namely, conflicts of interest, training competencies, data sharing, and the need to integrate community input into all stages of translational research. Researchers creating collaborative teams can learn from the lessons of the current literature and develop plans to address common ethical challenges for collaborative teams. These teams can also increase research in this area by studying themselves and their responses to ethical challenges. There is also an ongoing need to train researchers to address ethical challenges that arise in collaborative teams since these types of teams are likely to dominate medical research in the foreseeable future.

Citation

Payne PW, Callier SL, Hertelendy AJ (2014) Towards “Collaborative Ethics” for Translational Medical Research Teams. J Transl Med Epidemiol 2(2): 1034.

Keywords

•    Ethics
•    Translation
•    Collaboration
•    Team science
•    Interdisciplinary
•    Conflicts of interest

Introduction

The field of medicine is comprised of ever increasing silos among fields constructed to address individual diseases in increasingly small, conceptual packages (i.e. molecular genetics of disease) with less focus on the human body as an integrated system [1,2]. The growing number of specialists is diverse in their languages, behaviors, actions, and culture. Yet, increasingly funders are recognizing that the collective intelligence of these multidisciplinary perspectives and experiences can have a powerful impact on medical and ultimately the health care system. These collaborative teams can yield greater results together by producing strategies that consider multiple specialty areas that impact medical research, including but not limited to: bioinformatics, bench science, applied science, public health considerations, knowledge about local cultural factors, and ethics.

Such diversity can strengthen teams seeking to maximize available knowledge in the translation pipeline from bench to bedside, but diversity can also hinder ethical decision-making. For example, if half of a team’s members favor detailed consent forms for a project and another half favors an implied consent approach, the time to carry out the project could be in jeopardy and the financial resources necessary might also be affected. The amount of ethical training that team members have also varies leaving some to be more judicious with regards to addressing ethical concerns than others [3,4]. For instance, some fields of medicine, such as oncology, have undergone greater ethical scrutiny from bioethicists and the public making their specialists much more aware of ethics as a concern in research. Social scientists who study ethical issues raised by the field of genomics may have a different view on ethical issues than bench scientists or clinician researchers due to robust discussion anticipating the ethical concerns raised by genomics. The National Human Genome Research Institute dedicates 5% of its budget to the study of Ethical, Legal, and Social Implications (ELSI) of the field – a unique approach not matched by any other National Institutes of Health entity [5]. This financial focus has generated a body of literature on this topic and created a group of scholars throughout America’s campuses who teach courses to educate future researchers on the ELSI of genomics.

Understanding ethical diversity arising from personal and institutional belief systems and finding compromises are important goals for successful collaborative science teams to achieve [6]. Interdisciplinary ethics training has been discussed to a limited extent in the literature, [7] in addition to other competencies related to collaborative leadership, conflict resolution, and inter-professional/communication [8]. This article reviews key concerns for collaborative science teams arising from this literature.

Literature Review

To identify key ethical issues raised by collaborative science in the field of translational medical research, we searched PubMed (http://www.ncbi.nlm.nih.gov/pubmed/) using Medical Subject Headings (MeSH), the US National Library of Medicine’s controlled vocabulary for indexing articles. PubMed contains over 23 million citations for biomedical literature from various sources, including life science journals, online books, and MEDLINE. We searched this resource to identify articles on the ethics of clinical and translational research using the following search strings:

• “Interdisciplinary Studies”[Mesh] AND “Ethics”[Mesh]

• “Translational Medical Research/ethics”[Mesh] and "interdisciplinary or collaboration or multidisciplinary"

Using these search terms we identified and reviewed a total of 14 articles. All articles were read in their entirety and key information was extracted from the articles including year of publication, journal name, focus/topic of the article, stakeholders or collaborators discussed in the article, country of focus, whether interdisciplinary research was discussed in the article, and whether the article was relevant to the review. Three of the articles discussed interdisciplinary research explicitly [9-11]. None of the articles were country specific, but one of them discussed the United States and other countries. The topics covered in these three articles were neurosurgery, health information technology and translational research.

In each of the articles reviewed, the degree of focus on ethical issues varied. One article discussed ethical issues raised by certain types of research such as biomarker research [10]. Two others discussed conflicts of interest and regulation. One of these discussed funding, regulation and intellectual property [11]. Six articles discussed translational research directly. Only three of these also discussed interdisciplinary research [9-11]. Regulations and conflicts of interest were the primary topics of discussion in two of these articles [11,12]. The others discussed IRB review [12], participatory research that included the end users of research results and data sharing topics [9]. Key themes from these articles are discussed below.

conflict of Interest

Managing conflicts of interest is an essential part of collaborative teams because team members may be motivated by a number of factors, some of which may prevent them from focusing on the problem being addressed by their research and instead focusing on self gain. Conflicts should be known by all team members in order for them to understand the potential reasons for their team members’ viewpoints on different issues – especially controversial ones. On the other hand, conflicts of interest guidelines might stifle private-public collaborations as private partners possess a conflict that must be accepted instead of managed. Stossel et al. state that "industry-physicians' collaborations" can be suppressed by what the author labels as a “conflict of interest regulation movement [13]”. Lacey and Sutherland point out that the models for translation in industry and academia are different with industry being less interested in the problem at hand and more concerned with a profit margin [11]. For example, if one intervention approach would earn substantially less profit and have marginally greater effectiveness, industry might be less likely to favor it, whereas academia might support it.

Training competencies

While no article clearly provided competencies or a curriculum for training people to deal with ethical concerns in a collaborative science team, one article by Woodward-Kron et al. discussed the use of interdisciplinary perspectives to teach ethical communication using multimedia tools [12]. The authors are aware of an effort underway at NIH that is providing ethical training to researchers from multiple disciplines. This effort stems from NCATS – National Center for Advancing Translational Science [14]. This center is funding awards called Clinical and Translational Science Awards to various medical centers throughout the country. A portion of these awards pay for clinical and translational science degree programs. Most of these programs have some ethical component integrated into their curricula. This effort may provide guidance for similar educational efforts throughout the country.

Data sharing

Data sharing agreements are key for successful collaborative science teams. Ethical challenges that arise here include who should receive the information among the team, who owns the information, whether the information should be shared beyond the team with other researchers, and if the information should be made public. Data sharing issues are growing more important in the age of personalized genomic medicine [15]. Sethi and Theodos discuss the evolving world of electronic health records and how these records are likely to be expanded with genomic information [9]. Multiple researchers would like to tap into electronic health records in order to study various topics that may translate into better care for those included in the electronic health record systems. In the process of translating this information, factors such as the Genetic Information Nondiscrimination Act of 2008 pose unique concerns because the law prohibits any use of this information for discriminatory purposes by health insurers and employers. Such laws can offer protection to patients and also may inhibit some researchers from seeking to use the information. Balancing the needs of communities and researchers is key for successful data sharing especially for community-researcher collaborative teams.

Community versus researcher based research questions

With an increasing focus on the role of community members in research by the National Institutes of Health and other entities, such as the Patient Centered Outcomes Research Institute (PCORI), the development of research questions becomes more challenging, yet potentially more translatable than in the past. Translational research requires looking forward with an eye towards the end users [10]. In most cases these are patients who are likely to benefit from a new innovation, but could also be other individuals – such as health professionals – who are likely to utilize some new intervention.

A community’s desire to see an intervention which prevents or treats a disease that impacts them, often leads to an increased focus on ethics for collaborative science teams including community members [16]. Articles reviewed pointed to the need for these end users to participate in all stages of research [10]. This can be difficult because laypeople often lack the requisite background knowledge to understand certain in-depth research questions. Yet, their lack of understanding can motivate researchers to find better ways to communicate. Also, their day to day knowledge of their disease can open the eyes of researchers to new ways of viewing an illness. End users tend to focus on the beneficence that arises from research and can help a collaborative team decrease the harm to their research participants and enhance the benefits. A collaborative team involving end users is best when equitable according to the articles. This results in a shift of the role for research participants from a passive data source to an advisor or co-researcher [16]. Another challenge faced by collaborative teams is that despite an increasing focus on community participation in research, true inclusion is still uncommon, but increasing. Chiu et al. also indicates that the success of translational research projects is much higher with good participation of the end users [16]. Such perceptions may lead to more community-researcher collaborative teams in the future.

Conclusion

Collaborative medical research teams seeking to translate research into practice face numerous obstacles. Here we focus on key ethical issues that may disrupt teams and prevent them from succeeding – namely, the need to integrate community input into all stages of translational research, conflicts of interest, training competencies, and data sharing concerns. These and other ethical issues require more research in the context of collaborative translational research teams and these teams can contribute to research in this area as each team represents a natural experiment in scientific collaboration. In addition to more research in this area, trainees require education in how to address the unique ethical challenges of collaboration with the goal of resolving the conflicts in order to achieve the grand goals that translational researchers have created for themselves – translating research into practice and thereby community health improvement.

References

1. Bonham AC, Solomon MZ. Moving comparative effectiveness research into practice: implementation science and the role of academic medicine. Health Aff (Millwood). 2010; 29: 1901-1905.

2. Schuetz B, Mann E, Everett W. Educating health professionals collaboratively for team-based primary care. Health Aff (Millwood). 2010; 29: 1476-1480.

3. Stokols D, Misra S, Moser RP, Hall KL, Taylor BK. The ecology of team science: understanding contextual influences on transdisciplinary collaboration. Am J Prev Med. 2008; 35: S96-115.

4. Leipzig RM, Hyer K, Ek K, Wallenstein S, Vezina ML, Fairchild S, et al. Attitudes toward working on interdisciplinary healthcare teams: a comparison by discipline. J Am Geriatr Soc. 2002; 50: 1141-1148.

5. Department of Health and Human Services, National Institutes of Health, National Human Genome Research Instiute. FY 2013 Budget.

6. Clark PG, Cott C, Drinka TJ. Theory and practice in interprofessional ethics: a framework for understanding ethical issues in health care teams. J Interprof Care. 2007; 21: 591-603.

7. Engel J, Prentice D. The ethics of interprofessional collaboration. Nurs Ethics. 2013; 20: 426-435.

8. Ewashen C, McInnis-Perry G, Murphy N. Interprofessional collaboration-in-practice: the contested place of ethics. Nurs Ethics. 2013; 20: 325-335.

9. Sethi P, Theodos K. Translational bioinformatics and healthcare informatics: computational and ethical challenges. Perspect Health Inf Manag. 2009; 6: 1h.

10. Callard F, Rose D, Wykes T. Close to the bench as well as at the bedside: involving service users in all phases of translational research. Health Expect. 2012; 15: 389-400.

11. Lacey C, Sutherland G. Advancing neurosurgery through translational research. Neurosurgery. 2013; 72 Suppl 1: 176-181.

12. Cola PA, Reider C, Strasser JE. Ohio CTSAs implement a reliant IRB model for investigator-initiated multicenter clinical trials. Clin Transl Sci. 2013; 6: 176-178.

13. Stossel TP, Stell LK. Time to ‘walk the walk’ about industry ties to enhance health. Nat Med. 2011; 17: 437-438.

14. Orwoll ES, Shapiro J, Veith S, Wang Y, Lapidus J, Vanek C, et al. Evaluation of teriparatide treatment in adults with osteogenesis imperfecta. J Clin Invest. 2014; 124: 491-498.

15. Callier S, Husain R, Simpson R. Genomic data-sharing: what will be our legacy? Front Genet. 2014; 5: 34.

16. Chiu CG, Mitchell TL, Fitch MI. From patient to participant: enhancing the validity and ethics of cancer research through participatory research. J Cancer Educ. 2013; 28: 237-246.

Received : 06 Jun 2014
Accepted : 30 Jul 2014
Published : 02 Aug 2014
Journals
Annals of Otolaryngology and Rhinology
ISSN : 2379-948X
Launched : 2014
JSM Schizophrenia
Launched : 2016
Journal of Nausea
Launched : 2020
JSM Internal Medicine
Launched : 2016
JSM Hepatitis
Launched : 2016
JSM Oro Facial Surgeries
ISSN : 2578-3211
Launched : 2016
Journal of Human Nutrition and Food Science
ISSN : 2333-6706
Launched : 2013
JSM Regenerative Medicine and Bioengineering
ISSN : 2379-0490
Launched : 2013
JSM Spine
ISSN : 2578-3181
Launched : 2016
Archives of Palliative Care
ISSN : 2573-1165
Launched : 2016
JSM Nutritional Disorders
ISSN : 2578-3203
Launched : 2017
Annals of Neurodegenerative Disorders
ISSN : 2476-2032
Launched : 2016
Journal of Fever
ISSN : 2641-7782
Launched : 2017
JSM Bone Marrow Research
ISSN : 2578-3351
Launched : 2016
JSM Mathematics and Statistics
ISSN : 2578-3173
Launched : 2014
Journal of Autoimmunity and Research
ISSN : 2573-1173
Launched : 2014
JSM Arthritis
ISSN : 2475-9155
Launched : 2016
JSM Head and Neck Cancer-Cases and Reviews
ISSN : 2573-1610
Launched : 2016
JSM General Surgery Cases and Images
ISSN : 2573-1564
Launched : 2016
JSM Anatomy and Physiology
ISSN : 2573-1262
Launched : 2016
JSM Dental Surgery
ISSN : 2573-1548
Launched : 2016
Annals of Emergency Surgery
ISSN : 2573-1017
Launched : 2016
Annals of Mens Health and Wellness
ISSN : 2641-7707
Launched : 2017
Journal of Preventive Medicine and Health Care
ISSN : 2576-0084
Launched : 2018
Journal of Chronic Diseases and Management
ISSN : 2573-1300
Launched : 2016
Annals of Vaccines and Immunization
ISSN : 2378-9379
Launched : 2014
JSM Heart Surgery Cases and Images
ISSN : 2578-3157
Launched : 2016
Annals of Reproductive Medicine and Treatment
ISSN : 2573-1092
Launched : 2016
JSM Brain Science
ISSN : 2573-1289
Launched : 2016
JSM Biomarkers
ISSN : 2578-3815
Launched : 2014
JSM Biology
ISSN : 2475-9392
Launched : 2016
Archives of Stem Cell and Research
ISSN : 2578-3580
Launched : 2014
Annals of Clinical and Medical Microbiology
ISSN : 2578-3629
Launched : 2014
JSM Pediatric Surgery
ISSN : 2578-3149
Launched : 2017
Journal of Memory Disorder and Rehabilitation
ISSN : 2578-319X
Launched : 2016
JSM Tropical Medicine and Research
ISSN : 2578-3165
Launched : 2016
JSM Head and Face Medicine
ISSN : 2578-3793
Launched : 2016
JSM Cardiothoracic Surgery
ISSN : 2573-1297
Launched : 2016
JSM Bone and Joint Diseases
ISSN : 2578-3351
Launched : 2017
JSM Bioavailability and Bioequivalence
ISSN : 2641-7812
Launched : 2017
JSM Atherosclerosis
ISSN : 2573-1270
Launched : 2016
Journal of Genitourinary Disorders
ISSN : 2641-7790
Launched : 2017
Journal of Fractures and Sprains
ISSN : 2578-3831
Launched : 2016
Journal of Autism and Epilepsy
ISSN : 2641-7774
Launched : 2016
Annals of Marine Biology and Research
ISSN : 2573-105X
Launched : 2014
JSM Health Education & Primary Health Care
ISSN : 2578-3777
Launched : 2016
JSM Communication Disorders
ISSN : 2578-3807
Launched : 2016
Annals of Musculoskeletal Disorders
ISSN : 2578-3599
Launched : 2016
Annals of Virology and Research
ISSN : 2573-1122
Launched : 2014
JSM Renal Medicine
ISSN : 2573-1637
Launched : 2016
Journal of Muscle Health
ISSN : 2578-3823
Launched : 2016
JSM Genetics and Genomics
ISSN : 2334-1823
Launched : 2013
JSM Anxiety and Depression
ISSN : 2475-9139
Launched : 2016
Clinical Journal of Heart Diseases
ISSN : 2641-7766
Launched : 2016
Annals of Medicinal Chemistry and Research
ISSN : 2378-9336
Launched : 2014
JSM Pain and Management
ISSN : 2578-3378
Launched : 2016
JSM Women's Health
ISSN : 2578-3696
Launched : 2016
Clinical Research in HIV or AIDS
ISSN : 2374-0094
Launched : 2013
Journal of Endocrinology, Diabetes and Obesity
ISSN : 2333-6692
Launched : 2013
Journal of Substance Abuse and Alcoholism
ISSN : 2373-9363
Launched : 2013
JSM Neurosurgery and Spine
ISSN : 2373-9479
Launched : 2013
Journal of Liver and Clinical Research
ISSN : 2379-0830
Launched : 2014
Journal of Drug Design and Research
ISSN : 2379-089X
Launched : 2014
JSM Clinical Oncology and Research
ISSN : 2373-938X
Launched : 2013
JSM Bioinformatics, Genomics and Proteomics
ISSN : 2576-1102
Launched : 2014
JSM Chemistry
ISSN : 2334-1831
Launched : 2013
Journal of Trauma and Care
ISSN : 2573-1246
Launched : 2014
JSM Surgical Oncology and Research
ISSN : 2578-3688
Launched : 2016
Annals of Food Processing and Preservation
ISSN : 2573-1033
Launched : 2016
Journal of Radiology and Radiation Therapy
ISSN : 2333-7095
Launched : 2013
JSM Physical Medicine and Rehabilitation
ISSN : 2578-3572
Launched : 2016
Annals of Clinical Pathology
ISSN : 2373-9282
Launched : 2013
Annals of Cardiovascular Diseases
ISSN : 2641-7731
Launched : 2016
Journal of Behavior
ISSN : 2576-0076
Launched : 2016
Annals of Clinical and Experimental Metabolism
ISSN : 2572-2492
Launched : 2016
Clinical Research in Infectious Diseases
ISSN : 2379-0636
Launched : 2013
JSM Microbiology
ISSN : 2333-6455
Launched : 2013
Journal of Urology and Research
ISSN : 2379-951X
Launched : 2014
Journal of Family Medicine and Community Health
ISSN : 2379-0547
Launched : 2013
Annals of Pregnancy and Care
ISSN : 2578-336X
Launched : 2017
JSM Cell and Developmental Biology
ISSN : 2379-061X
Launched : 2013
Annals of Aquaculture and Research
ISSN : 2379-0881
Launched : 2014
Clinical Research in Pulmonology
ISSN : 2333-6625
Launched : 2013
Journal of Immunology and Clinical Research
ISSN : 2333-6714
Launched : 2013
Annals of Forensic Research and Analysis
ISSN : 2378-9476
Launched : 2014
JSM Biochemistry and Molecular Biology
ISSN : 2333-7109
Launched : 2013
Annals of Breast Cancer Research
ISSN : 2641-7685
Launched : 2016
Annals of Gerontology and Geriatric Research
ISSN : 2378-9409
Launched : 2014
Journal of Sleep Medicine and Disorders
ISSN : 2379-0822
Launched : 2014
JSM Burns and Trauma
ISSN : 2475-9406
Launched : 2016
Chemical Engineering and Process Techniques
ISSN : 2333-6633
Launched : 2013
Annals of Clinical Cytology and Pathology
ISSN : 2475-9430
Launched : 2014
JSM Allergy and Asthma
ISSN : 2573-1254
Launched : 2016
Journal of Neurological Disorders and Stroke
ISSN : 2334-2307
Launched : 2013
Annals of Sports Medicine and Research
ISSN : 2379-0571
Launched : 2014
JSM Sexual Medicine
ISSN : 2578-3718
Launched : 2016
Annals of Vascular Medicine and Research
ISSN : 2378-9344
Launched : 2014
JSM Biotechnology and Biomedical Engineering
ISSN : 2333-7117
Launched : 2013
Journal of Hematology and Transfusion
ISSN : 2333-6684
Launched : 2013
JSM Environmental Science and Ecology
ISSN : 2333-7141
Launched : 2013
Journal of Cardiology and Clinical Research
ISSN : 2333-6676
Launched : 2013
JSM Nanotechnology and Nanomedicine
ISSN : 2334-1815
Launched : 2013
Journal of Ear, Nose and Throat Disorders
ISSN : 2475-9473
Launched : 2016
JSM Ophthalmology
ISSN : 2333-6447
Launched : 2013
Journal of Pharmacology and Clinical Toxicology
ISSN : 2333-7079
Launched : 2013
Annals of Psychiatry and Mental Health
ISSN : 2374-0124
Launched : 2013
Medical Journal of Obstetrics and Gynecology
ISSN : 2333-6439
Launched : 2013
Annals of Pediatrics and Child Health
ISSN : 2373-9312
Launched : 2013
JSM Clinical Pharmaceutics
ISSN : 2379-9498
Launched : 2014
JSM Foot and Ankle
ISSN : 2475-9112
Launched : 2016
JSM Alzheimer's Disease and Related Dementia
ISSN : 2378-9565
Launched : 2014
Journal of Addiction Medicine and Therapy
ISSN : 2333-665X
Launched : 2013
Journal of Veterinary Medicine and Research
ISSN : 2378-931X
Launched : 2013
Annals of Public Health and Research
ISSN : 2378-9328
Launched : 2014
Annals of Orthopedics and Rheumatology
ISSN : 2373-9290
Launched : 2013
Journal of Clinical Nephrology and Research
ISSN : 2379-0652
Launched : 2014
Annals of Community Medicine and Practice
ISSN : 2475-9465
Launched : 2014
Annals of Biometrics and Biostatistics
ISSN : 2374-0116
Launched : 2013
JSM Clinical Case Reports
ISSN : 2373-9819
Launched : 2013
Journal of Cancer Biology and Research
ISSN : 2373-9436
Launched : 2013
Journal of Surgery and Transplantation Science
ISSN : 2379-0911
Launched : 2013
Journal of Dermatology and Clinical Research
ISSN : 2373-9371
Launched : 2013
JSM Gastroenterology and Hepatology
ISSN : 2373-9487
Launched : 2013
Annals of Nursing and Practice
ISSN : 2379-9501
Launched : 2014
JSM Dentistry
ISSN : 2333-7133
Launched : 2013
Author Information X