Maternal Willingness to Participate in Research Involving Neuroimaging, Biological Sample Collection, and Data Storage: Towards a Multicentre Neurodevelopmental Research in a low-resource setting

This study of 300 mothers in a low-resource setting reveals high overall willingness to participate in neurodevelopmental research involving brain imaging and routine biospecimens, though acceptance varies significantly by sample type and is influenced by socioeconomic factors, highlighting the need for tailored strategies to ensure equitable engagement.

The Gist

Imagine you are trying to understand how a baby's brain is built, like a complex, beautiful house under construction. To do this, scientists want to take "photos" of the brain (using MRI and EEG machines) and collect "building materials" (like blood, milk, or even tears) from the mother to see what's happening during pregnancy and after birth.

But before they can start, they need to ask the mothers: "Would you be willing to let us do this?"

This study is like a big survey asking 300 mothers in Ghana (a country with limited medical resources) if they would say "yes" to these scientific requests. Here is what they found, explained simply:

1. The "Brain Scan" Question: Most Moms Say Yes!

The researchers asked, "Would you let us scan your baby's brain to check for problems, even if we can't fix the problem?"

• The Result: About 92% of the moms said YES.
• The Analogy: It's like asking if you'd let a mechanic look under the hood of your car to see if the engine is running smoothly, even if the car is old and you can't afford a new one. Most moms want to know the truth about their child's health, even if the news is hard to hear.
• The Catch: While most said yes, the moms who had less money were a bit more hesitant about the expensive brain scans (MRI), and older moms were less keen on the EEG (a test that uses a cap with sensors). It seems like if you don't have much money, you might worry about the cost or the hassle of getting to the clinic.

2. The "Sample Collection" Menu: From Easy to Tricky

The researchers asked if moms would give different types of samples. Think of this as a menu where some items are easy to order, and others are a bit more personal.

• The "Easy Order" (Blood, Stool, Urine):
  • Result: Almost everyone said YES (over 95%).
  • Why: These are things doctors ask for all the time. It's like ordering a standard coffee; it's routine and familiar.
• The "Special Order" (Breast milk, Placenta, Amniotic fluid):
  • Result: About 50-55% said YES.
  • Why: This is a bit more personal. Giving breast milk or the afterbirth feels intimate. It's like being asked to share a family heirloom; some are happy to, but others feel it's too private or worry about how it will be used.
• The "Weird Order" (Tears, Saliva, Vaginal fluid):
  • Result: Only 16% to 47% said YES.
  • Why: These feel very strange or embarrassing to some people. It's like being asked to give a sample of your tears or spit in a cup for science. Many moms felt shy or uncomfortable with this.

Who said yes to the tricky stuff?

• Education matters: Moms with more education were much more likely to say yes to the tricky samples. It's like having a better map; if you understand why the scientist wants the sample, you are more willing to give it.
• Money matters: Moms with less money were less likely to say yes to the tricky samples. They might worry about the time it takes or feel that the system isn't looking out for them.

3. The "Time Capsule" Question: Storing Data for 10 Years

The researchers asked, "If we keep your brain scans and samples in a digital time capsule for 10 years to study later, is that okay?"

• The Result: Only 48% said YES.
• The Analogy: Imagine someone asking to keep your diary and your baby's first shoes in a vault for a decade to study them later. Half the moms said, "No thanks, I'd rather keep those private."
• Why? People worry about privacy. They don't want their data to be misused or shared with the wrong people. Again, moms with more education were more comfortable with this idea, while those with less money were more worried.

The Big Picture: What Does This Mean?

This study is like a "reality check" for scientists planning big research projects in poorer countries.

1. Good News: Mothers are generally very willing to help science. They want to know about their babies' brains and are happy to give routine samples like blood.
2. The Warning: If scientists only ask the "easy" questions, they might miss out on the most important data.
   • The Inequality Trap: Because moms with less money and less education are less likely to say "yes" to the tricky tests or long-term storage, the final research results might only represent the rich and educated. It's like trying to understand the whole country by only interviewing people who live in big houses.
3. The Solution: To fix this, scientists need to be better at explaining why they need these samples. They need to build trust, especially with poorer families, so that the research includes everyone, not just the privileged few.

In short: Mothers in Ghana are eager to help build a better future for their children's brains, but scientists need to make sure they don't leave the most vulnerable families behind in the process.

Technical Summary

1. Problem Statement

Understanding the prenatal and postnatal influences on early brain development requires comprehensive data collection, including neuroimaging (MRI, EEG) and diverse biological samples (blood, stool, placenta, amniotic fluid, etc.). While such methodologies are standard in high-resource settings, their feasibility and acceptability in Low- and Middle-Income Countries (LMICs) remain underexplored.

Specific gaps addressed by this study include:

• Lack of Integrated Data: Prior research has focused on isolated procedures (e.g., imaging or specific biospecimens) rather than comprehensive, longitudinal protocols involving both.
• Contextual Unknowns: There is insufficient data on maternal willingness to consent to complex, multi-modal research (including long-term data storage) in low-resource settings like Ghana.
• Equity Concerns: It is unclear whether socioeconomic factors (income, education) create barriers that could lead to the underrepresentation of disadvantaged mothers in neurodevelopmental research, potentially biasing future findings.

2. Methodology

• Study Design: Cross-sectional survey.
• Setting: A public tertiary facility in Ghana (Antenatal clinics and postpartum units).
• Participants:
  • Target: 385 pregnant women and mothers of infants/young children.
  • Actual Sample: 300 respondents.
  • Inclusion: Mothers ≥18 years, fluent in English or local languages, capable of informed consent.
  • Exclusion: Severe cognitive impairment, history of substance abuse, or known major fetal anomalies (for prenatal recruitment).
• Data Collection:
  • Structured, pre-tested questionnaire.
  • Hypothetical Scenarios: Participants were asked about their willingness to undergo:
    • Brain health testing (specifically EEG and MRI), even for untreatable conditions.
    • Collection of 10 specific biological samples: Blood, stool, urine, breast milk, placenta, amniotic fluid, vaginal fluid, nasal fluid, saliva, and tears.
    • Long-term storage: Consent to store images and samples for 10 years for future research.
• Statistical Analysis:
  • Variables were categorized (e.g., Age: 18–30, 31–40, ≥41; Education: Higher vs. Lower; Income: Low, Middle, High).
  • Bivariate Analysis: Chi-square tests and independent t-tests.
  • Multivariable Analysis: Logistic Regression models to identify independent predictors (Odds Ratios [OR] and 95% Confidence Intervals [CI]) for willingness to consent.
  • Significance Level: $p < 0.05$.

3. Key Results

A. General Willingness for Brain Health Testing

• Overall: 92% of participants expressed willingness to take a brain health test, even if it revealed untreatable diseases.
• Specific Modalities:
  • MRI: ~88% willing.
  • EEG: ~82% willing.
• Predictors:
  • Relationship Status: Being in a relationship significantly increased willingness for MRI (OR = 3.35) and marginally for EEG.
  • Income: Low income significantly reduced willingness for MRI (OR = 0.29) and EEG (OR = 0.27).
  • Age: Women aged ≥41 were less likely to consent to EEG (OR = 0.22).
  • Defect History: No significant association was found between a history of fetal/birth defects and willingness to undergo testing.

B. Willingness for Biological Sample Collection

Willingness varied drastically by sample type:

• High Acceptance (>95%): Routine samples (Blood: 99.7%, Stool: 98.3%, Urine: 97.7%).
• Moderate Acceptance (51–55%): Breast milk (55.3%), Placenta (52%), Amniotic fluid (51%).
• Low Acceptance (16–47%): Vaginal fluid (47%), Nasal fluid (22.7%), Saliva (19.3%), Tears (16.3%).

Socioeconomic Predictors for Biospecimens:

• Education: Higher maternal education was the strongest positive predictor for donating sensitive samples (breast milk, placenta, amniotic fluid, vaginal/nasal fluid, saliva, tears).
• Income: Low income was consistently associated with reduced willingness to provide sensitive samples (placenta, amniotic fluid, breast milk, vaginal fluid).
• Relationship Status: Being in a relationship increased willingness for placenta and amniotic fluid.
• Health Insurance: Lack of insurance showed sporadic positive associations for willingness to provide nasal fluid, saliva, and tears.

C. Willingness for Long-Term Data Storage

• Consent Rate: Only 48% of participants consented to the 10-year storage of images and biological samples for future research.
• Predictors:
  • Education: Higher education was a strong positive predictor (OR = 4.35).
  • Income: Low income was a strong negative predictor (OR = 0.30).

4. Key Contributions

1. Feasibility Assessment: Demonstrates that high maternal willingness exists for neurodevelopmental research involving neuroimaging and routine biospecimens in a low-resource setting, supporting the feasibility of multicenter longitudinal studies.
2. Granular Consent Data: Provides the first detailed breakdown of consent rates for a wide array of biological matrices (including tears, nasal fluid, and placenta) in an LMIC context.
3. Identification of Inequities: Highlights that socioeconomic status (income) and education are critical barriers. Low-income and less-educated mothers are systematically less likely to consent to sensitive procedures and long-term storage, risking the underrepresentation of the most vulnerable populations in future brain health datasets.
4. Decoupling of Factors: Challenges the assumption that a history of fetal defects increases willingness to test; instead, it suggests that structural barriers (cost, access, awareness) and cultural factors are more influential.

5. Significance and Implications

• Ethical Frameworks: The findings underscore the need for contextually tailored consent models. Standard protocols may fail to engage low-income and less-educated populations, leading to biased research outcomes.
• Capacity Building: To ensure equitable participation, researchers must invest in community engagement, education regarding the value of sensitive samples (e.g., placenta, amniotic fluid), and addressing privacy concerns regarding long-term data storage.
• Research Design: Future multicenter studies in LMICs must account for these disparities. Strategies may include:
  • Simplifying consent processes for sensitive samples.
  • Providing specific assurances regarding data security to mitigate mistrust among low-income groups.
  • Actively recruiting from diverse socioeconomic backgrounds to prevent the "healthy worker" or "educated mother" bias in neurodevelopmental cohorts.
• Policy: The low consent rate for long-term storage (48%) suggests a need for transparent communication about data governance, particularly as AI-driven research increasingly relies on secondary data reuse.

Conclusion: While the "willingness gap" for routine testing is small, significant inequities exist for sensitive sampling and data storage. Addressing these through culturally sensitive engagement and structural support is essential for sustainable, representative neurodevelopmental research in Ghana and similar low-resource settings.