Research ethics: Overcoming the exploitative dynamic through ethical research
Authors
- Tanvir C TurinDepartment of Family Medicine, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada
- Mohammad M H RaihanDepartment of Community Health Science, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada
- Meriem ArouaDepartment of Community Health Science, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada
- Nashit A ChowdhuryDepartment of Community Health Science, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada
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Published by Bangabandhu Sheikh Mujib Medical University (currently, Bangladesh Medical University).
Historical context
The evolution of contemporary research ethics frameworks developed in direct response to historical methodological transgressions. Many international standards of ethical conduct emerged as direct responses to egregious abuses in scientific studies. Examples include Nazi physicians' non-therapeutic experimentation on concentration camp prisoners (1940–1945) [3,4], involving hypothermia trials and forced sterilization procedures (Blacker). Similarly, the Tuskegee Syphilis Study (1932–1972) [3,4] by the U.S. Public Health Service withheld effective treatment from 399 African American men infected with syphilis, under the guise of providing free healthcare, to observe the natural progression of the disease. This unethical study emphasised the importance of beneficence and justice in research practices. Another egregious example is the Willowbrook Hepatitis Study (1956) [3,4], where researchers deliberately infected institutionalised children with hepatitis to study the disease. Parents were effectively coerced into consenting by being promised quicker access to institutional services, exposing vulnerabilities in voluntary participation safeguards. In a similar vein, the Jewish Chronic Disease Hospital Study (1963) [4] involved injecting live cancer cells into elderly patients without their informed consent. The primary investigator deliberately avoided using the word “cancer” when explaining the procedure, instead employing vague language to obscure the true nature of the experiment. These types of incidents spurred the creation and reinforcement of ethical research principles, which are reflected in seminal guidelines such as the Belmont Report [1] and the Declaration of Helsinki [5], which emphasize informed consent and right to withdraw from the study, respect for persons, beneficence, and justice in research involving human subjects.
- Tokenism: Communities/ patients are involved superficially, often to meet diversity requirements, without genuine integration into decision-making or research processes. Top-down decision making and resource disparity occurs.
- Extractive practices: Researchers collect data or knowledge from communities without adequately sharing findings, credit, or benefits with those communities. This one-sided or one-off research approach can strip communities of their agency and insights. This is known as ‘helicopter research’, or "parasitic research" or ‘parachute in and out research” [10].
- Lack of reciprocity: Despite their contributions to the research, communities may be left without meaningful benefits, such as improved resources, knowledge, or outcomes. This absence of reciprocity can foster resentment and distrust.
- Disregard for context: Researchers may impose their own frameworks, goals, or methods without considering the cultural, social, or historical context of the communities involved. Such disregard can lead to misinterpretations and reinforce existing inequalities.
- Unaddressed or hidden harms: The research process may inadvertently perpetuate stereotypes, stigmatize communities, or fail to mitigate potential risks or harms to participants. Ethical oversight is essential to prevent such negative outcomes.
Addressing exploitative dynamics
Addressing these exploitative dynamics is crucial for fostering ethical research practices that genuinely respect and benefit all participants involved. While other stakeholders-such as funding agencies, community members, and regulatory bodies-play important roles in overcoming these exploitative dynamics and ensure ethical research practices, researchers and academic institutions are the primary actors central to this effort.
- Inclusive and empowered community engagement and involvement: Actively involve community members at every stage of the research process-planning, design, implementation, and dissemination [9,10]. This ensures the research aligns with community priorities and fosters shared ownership.
- Create and apply participant-centered informed consent: Create clear, comprehensive information about the study’s purpose, risks, benefits, and participants’ rights to empower individuals to make informed decisions about their involvement.
- Implement fair and equitable participant selection: Use unbiased and inclusive criteria for participant recruitment, avoiding discrimination based on gender, race, socioeconomic status, or other factors.
- Prioritize participant welfare: Conduct thorough risk assessments and implement strategies to minimize harm and maximize benefits, always prioritizing the well-being of participants.
- Establish benefit-sharing agreements: Clearly identification how research benefits will be shared with participants and their communities, ensuring recognition and reciprocity for their contributions.
- Ensure transparency and accountability: Maintain openness about research goals, methods, and potential impacts, and remain accountable to participants and stakeholders throughout the process.
- Commit to ongoing ethical education: Continuously pursue ethical education to uphold high standards.
- Monitor and evaluate impact: Implement systems to track the research’s impact on communities, identifying and addressing any unintended consequences or exploitative dynamics.
- Advocate for ethical research practices: Promote awareness of ethical standards and equitable partnerships within institutions and among peers, emphasizing the importance of addressing exploitative dynamics.
- Establish a strong ethics infrastructure: Create and maintain a robust ethics infrastructure that includes Institutional Review Boards (IRBs) or Research Ethics Boards (REBs) to oversee research proposals and ensure compliance with ethical standards.
- Develop comprehensive ethical guidelines: Institutions should develop clear ethical guidelines and policies that outline expectations for researchers regarding the treatment of participants, informed consent, and data management. These guidelines should be easily accessible to all researchers.
- Facilitate ethical review processes: Streamline the IRB or REC review process to make it more efficient while maintaining rigorous ethical standards. This helps reduce delays in research approval while ensuring participant protection.
- Provide resources, training, and support: Ensure that adequate resources, including funding, staff, and training, are available to support ethical research practices. This includes providing support, training for IRB/Research Ethics Board members to help them effectively conduct ethical research practices. Also, offer regular training programs for researchers, faculty, and students on ethical research practices, emphasizing the importance of avoiding exploitative dynamics and fostering a culture of integrity
- Encourage and facilitate community/ patient engagement: Promote inclusive and meaningful engagement with communities/patients involved in research [9,10,11]. Also, institutions can facilitate partnerships with community organizations to ensure that research addresses local needs and priorities.
- Monitor research practices: Establish mechanisms for monitoring ongoing research projects to ensure compliance with ethical standards and address any emerging issues related to exploitative dynamics.
- Promote transparency and accountability: Encourage transparency in research processes by requiring researchers to disclose potential conflicts of interest and ensuring that findings are reported honestly and accurately.
- Foster a culture of ethical research: Cultivate an institutional culture that prioritizes ethical research by recognizing and rewarding ethical conduct among researchers. This can include highlighting projects that demonstrate innovative approaches to ethical accommodations, implementing ethics mentorship programs, and celebrate researchers who have made significant contributions to advancing ethical practices in their fields.
- Engage in advocacy for ethical standards: Academic institutions can advocate for ensuring broader ethical standards within the research community, influencing policies at national or international levels to promote ethical practices across various disciplines.
By implementing these strategies, scholars and academic institutions can play a crucial role in overcoming exploitative dynamics in research, ensuring that all participants are treated ethically and that the research conducted is of high integrity and quality.
As research continues to evolve in complexity and scope, it is imperative that ethical considerations remain at the forefront. By prioritizing ethical practices and addressing exploitative dynamics head-on, researchers can contribute to a more just and equitable society where the benefits of research are shared by all participants involved. Ultimately, ensuring ethical research is a collective responsibility that requires collaboration among all stakeholders involved. By fostering a culture of respect, transparency, and accountability, the research community can work towards overcoming exploitative dynamics and enhancing the overall quality of research.


Background characteristics | Number (%) |
Age at presentation (weeks)a | 14.3 (9.2) |
Gestational age at birth (weeks)a | 37.5 (2.8) |
Birth weight (grams)a | 2,975.0 (825.0) |
Sex |
|
Male | 82 (41) |
Female | 118 (59) |
Affected side |
|
Right | 140 (70) |
Left | 54 (27) |
Bilateral | 6 (3) |
Delivery type |
|
Normal vaginal delivery | 152 (76) |
Instrumental delivery | 40 (20) |
Cesarean section | 8 (4) |
Place of delivery |
|
Home delivery by traditional birth attendant | 30 (15) |
Hospital delivery by midwife | 120 (60) |
Hospital delivery by doctor | 50 (25) |
Prolonged labor | 136 (68) |
Presentation |
|
Cephalic | 144 (72) |
Breech | 40 (20) |
Transverse | 16 (8) |
Shoulder dystocia | 136 (68) |
Maternal diabetes | 40 (20) |
Maternal age (years)a | 27.5 (6.8) |
Parity of mother |
|
Primipara | 156 (78) |
Multipara | 156 (78) |
aMean (standard deviation), all others are n (%) |
Background characteristics | Number (%) |
Age at presentation (weeks)a | 14.3 (9.2) |
Gestational age at birth (weeks)a | 37.5 (2.8) |
Birth weight (grams)a | 2,975.0 (825.0) |
Sex |
|
Male | 82 (41) |
Female | 118 (59) |
Affected side |
|
Right | 140 (70) |
Left | 54 (27) |
Bilateral | 6 (3) |
Delivery type |
|
Normal vaginal delivery | 152 (76) |
Instrumental delivery | 40 (20) |
Cesarean section | 8 (4) |
Place of delivery |
|
Home delivery by traditional birth attendant | 30 (15) |
Hospital delivery by midwife | 120 (60) |
Hospital delivery by doctor | 50 (25) |
Prolonged labor | 136 (68) |
Presentation |
|
Cephalic | 144 (72) |
Breech | 40 (20) |
Transverse | 16 (8) |
Shoulder dystocia | 136 (68) |
Maternal diabetes | 40 (20) |
Maternal age (years)a | 27.5 (6.8) |
Parity of mother |
|
Primipara | 156 (78) |
Multipara | 156 (78) |
aMean (standard deviation), all others are n (%) |
Mean escape latency of acquisition day | Groups | ||||
NC | SC | ColC | Pre-SwE Exp | Post-SwE Exp | |
Days |
|
|
|
|
|
1st | 26.2 (2.3) | 30.6 (2.4) | 60.0 (0.0)b | 43.2 (1.8)b | 43.8 (1.6)b |
2nd | 22.6 (1.0) | 25.4 (0.6) | 58.9 (0.5)b | 38.6 (2.0)b | 40.5 (1.2)b |
3rd | 14.5 (1.8) | 18.9 (0.4) | 56.5 (1.2)b | 34.2 (1.9)b | 33.8 (1.0)b |
4th | 13.1 (1.7) | 17.5 (0.8) | 53.9 (0.7)b | 35.0 (1.6)b | 34.9 (1.6)b |
5th | 13.0 (1.2) | 15.9 (0.7) | 51.7 (2.0)b | 25.9 (0.7)b | 27.7 (0.9)b |
6th | 12.2 (1.0) | 13.3 (0.4) | 49.5 (2.0)b | 16.8 (1.1)b | 16.8 (0.8)b |
Average of acquisition days | |||||
5th and 6th | 12.6 (0.2) | 14.6 (0.8) | 50.6 (0.7)b | 20.4 (2.1)a | 22.4 (3.2)a |
NC indicates normal control; SC, Sham control; ColC, colchicine control; SwE, swimming exercise exposure. aP <0.05; bP <0.01. |
Categories | Number (%) |
Sex |
|
Male | 36 (60.0) |
Female | 24 (40.0) |
Age in yearsa | 8.8 (4.2) |
Education |
|
Pre-school | 20 (33.3) |
Elementary school | 24 (40.0) |
Junior high school | 16 (26.7) |
Cancer diagnoses |
|
Acute lymphoblastic leukemia | 33 (55) |
Retinoblastoma | 5 (8.3) |
Acute myeloid leukemia | 4 (6.7) |
Non-Hodgkins lymphoma | 4 (6.7) |
Osteosarcoma | 3 (5) |
Hepatoblastoma | 2 (3.3) |
Lymphoma | 2 (3.3) |
Neuroblastoma | 2 (3.3) |
Medulloblastoma | 1 (1.7) |
Neurofibroma | 1 (1.7) |
Ovarian tumour | 1 (1.7) |
Pancreatic cancer | 1 (1.7) |
Rhabdomyosarcoma | 1 (1.7) |
aMean (standard deviation) |
Narakas classification | Total 200 (100%) | Grade 1 72 (36%) | Grade 2 64 (32%) | Grade 3 50 (25%) | Grade 4 14 (7%) |
Complete recoverya | 107 (54) | 60 (83) | 40 (63) | 7 (14) | - |
Near complete functional recovery but partial deformitya | 22 (11) | 5 (7) | 10 (16) | 6 (12) | 1 (7) |
Partial recovery with gross functional defect and deformity | 31 (16) | 7 (10) | 13 (20) | 10 (20) | 1 (7) |
No significant improvement | 40 (20) | - | 1 (1.5) | 27 (54) | 12 (86) |
aSatisfactory recovery bGrade 1, C5, 6, 7 improvement; Grade 2, C5, 6, 7 improvement; Grade 3, panpalsy C5, 6, 7, 8, 9, Grade 4, panpalsy with Hornon’s syndrome. |
Narakas classification | Total 200 (100%) | Grade-1 72 (36%) | Grade-2 64 (32%) | Grade-3 50 (25%) | Grade-4 14 (7%) |
Complete recoverya | 107 (54) | 60 (83) | 40 (63) | 7 (14) | - |
Near complete functional recovery but partial deformitya | 22 (11) | 5 (7) | 10 (16) | 6 (12) | 1 (7) |
Partial recovery with gross functional defect and deformity | 31 (16) | 7 (10) | 13 (20) | 10 (20) | 1 (7) |
No significant improvement | 40 (20) | - | 1 (1.5) | 27 (54) | 12 (86) |
aSatisfactory recovery bGrade 1, C5, 6, 7 improvement; Grade 2, C5, 6, 7 improvement; Grade 3, panpalsy C5, 6, 7,8,9, Grade 4, panpalsy with Hornon’s syndrome. |
Variables in probe trial day | Groups | ||||
NC | SC | ColC | Pre-SwE Exp | Post-SwE Exp | |
Target crossings | 8.0 (0.3) | 7.3 (0.3) | 1.7 (0.2)a | 6.0 (0.3)a | 5.8 (0.4)a |
Time spent in target | 18.0 (0.4) | 16.2 (0.7) | 5.8 (0.8)a | 15.3 (0.7)a | 15.2 (0.9)a |
NC indicates normal control; SC, Sham control; ColC, colchicine control; SwE, swimming exercise exposure. aP <0.01. |
Pain level | Number (%) | P | ||
Pre | Post 1 | Post 2 | ||
Mean (SD)a pain score | 4.7 (1.9) | 2.7 (1.6) | 0.8 (1.1) | <0.001 |
Pain categories | ||||
No pain (0) | - | 1 (1.7) | 31 (51.7) | <0.001 |
Mild pain (1-3) | 15 (25.0) | 43 (70.0) | 27 (45.0) | |
Moderete pain (4-6) | 37 (61.7) | 15 (25.0) | 2 (3.3) | |
Severe pain (7-10) | 8 (13.3) | 2 (3.3) | - | |
aPain scores according to the visual analogue scale ranging from 0 to 10; SD indicates standard deviation |
Surgeries | Number (%) | Satisfactory outcomes n (%) |
Primary surgery (n=24) |
|
|
Upper plexus | 6 (25) | 5 (83) |
Pan-palsy | 18 (75) | 6 (33) |
All | 24 (100) | 11 (46) |
Secondary Surgery (n=26) |
|
|
Shoulder deformity | 15 (58) | 13 (87) |
Wrist and forearm deformity | 11 (42) | 6 (54) |
All | 26 (100) | 19 (73) |
Primary and secondary surgery | 50 (100) | 30 (60) |
Mallet score 14 to 25 or Raimondi score 2-3 or Medical Research grading >3 to 5. |
Narakas classification | Total 200 (100%) | Grade-1 72 (36%) | Grade-2 64 (32%) | Grade-3 50 (25%) | Grade-4 14 (7%) |
Complete recoverya | 107 (54) | 60 (83) | 40 (63) | 7 (14) | - |
Near complete functional recovery but partial deformitya | 22 (11) | 5 (7) | 10 (16) | 6 (12) | 1 (7) |
Partial recovery with gross functional defect and deformity | 31 (16) | 7 (10) | 13 (20) | 10 (20) | 1 (7) |
No significant improvement | 40 (20) | - | 1 (1.5) | 27 (54) | 12 (86) |
aSatisfactory recovery bGrade 1, C5, 6, 7 improvement; Grade 2, C5, 6, 7 improvement; Grade 3, panpalsy C5, 6, 7,8,9, Grade 4, panpalsy with Hornon’s syndrome. |
Trials | Groups | ||||
NC | SC | ColC | Pre-SwE Exp | Post-SwE Exp | |
1 | 20.8 (0.6) | 22.1 (1.8) | 41.1 (1.3)b | 31.9 (1.9)b | 32.9 (1.8)a, b |
2 | 10.9 (0.6) | 14.9 (1.7) | 37.4 (1.1)b | 24.9 (2.0)b | 26.8 (2.5)b |
3 | 8.4 (0.5) | 9.9 (2.0) | 32.8 (1.2)b | 22.0 (1.4)b | 21.0 (1.4)b |
4 | 7.8 (0.5) | 10.4 (1.3) | 27.6(1.1)b | 12.8 (1.2)b | 13.0 (1.4)b |
Savings (%)c | 47.7 (3.0) | 33.0 (3.0) | 10.0 (0.9)b | 23.6 (2.7)b | 18.9 (5.3)b |
NC indicates normal control; SC, Sham control; ColC, colchicine control; SwE, swimming exercise exposure. aP <0.05; bP <0.01. cThe difference in latency scores between trials 1 and 2, expressed as the percentage of savings increased from trial 1 to trial 2 |

