Jordanians’ Perspectives On Open Consent In Biomedical Research

Figures & data

Table 1 Participants’ Perspectives On The Informed Consent Process

Participants’ View On The Consent Process (%)		Helps Make The Research Credible And Ethical					Provides Greater Protection For Participants’ Rights					Provides The Participants With A Certain Level Of Control If The Researchers Breached The Agreed Terms					Participants’ Consent Should Always Be Obtained For Any Future Research
		Strongly Agree	Agree	Neutral	Disagree	Strongly Disagree	Strongly Agree	Agree	Neutral	Disagree	Strongly Disagree	Strongly Agree	Agree	Neutral	Disagree	Strongly Disagree	Strongly Agree	Agree	Neutral	Disagree	Strongly Disagree
Gender	Female	54.1	42.6	2.0	1.2	0.0	60.7	36.1	3.3	0.0	0.0	52.9	43.0	2.9	0.8	0.4	58.8	33.3	4.1	2.5	1.2
	Male	50.5	44.6	4.1	0.9	0.0	51.1	41.7	6.3	0.9	0.0	50.5	42.3	6.8	0.5	0.0	51.8	36.9	7.7	3.2	0.5
	χ^2 (P-value)	2.071 (0.558)					7.257 (0.064)					5.022 (0.285)					4.998 (0.287)
Age (years)	18–29	54.7	40.6	3.2	1.4	0.0	55.8	39.6	4.7	0.0	0.0	51.4	43.5	4.3	0.4	0.4	52.5	36.3	6.8	3.2	1.1
	30–39	52.2	42.4	4.3	1.1	0.0	62.4	30.1	6.5	1.1	0.0	58.1	35.5	5.4	1.1	0.0	68.1	28.6	2.2	1.1	0.0
	40 and Over	45.3	53.7	1.1	0.0	0.0	50.5	45.3	3.2	1.1	0.0	45.7	47.9	5.3	1.1	0.0	51.6	37.9	6.3	3.2	1.1
	χ^2 (P-value)	7.166 (0.306)					8.098 (0.231)					4.939 (0.764)					9.499 (0.302)
Education level (degree)	High school/lower	46.4	50.0	3.6	0.0	0.0	60.7	32.1	7.1	0.0	0.0	53.6	39.3	7.1	0.0	0.0	48.1	48.1	0.0	3.7	0.0
	Undergraduate	51.9	43.7	3.2	1.3	0.0	55.5	38.2	6.0	0.3	0.0	51.1	42.9	5.4	0.3	0.3	52.5	36.4	6.6	3.2	1.3
	Graduate	55.0	41.7	2.5	0.8	0.0	56.7	41.7	0.8	0.8	0.0	52.9	42.9	2.5	1.7	0.0	65.0	28.3	5.0	1.7	0.0
	χ^2 (P-value)	1.357 (0.968)					6.675 (0.352)					5.143 (0.742)					10.463 (0.234)
Residence	Town	44.7	50.5	4.9	0.0	0.0	50.5	41.7	7.8	0.0	0.0	48.0	43.1	7.8	0.0	1.0	51.5	33.0	10.7	2.9	1.9
	City	55.1	41.2	3.0	0.7	0.0	57.8	38.8	2.6	0.7	0.0	53.0	44.0	2.6	0.4	0.0	58.3	33.8	5.3	1.9	0.8
	Capital	54.3	41.5	1.1	3.2	0.0	58.5	34.0	7.4	0.0	0.0	53.2	37.2	7.4	2.1	0.0	53.2	39.4	2.1	5.3	0.0
	χ^2 (P-value)	10.778 (0.095)					9.071 (0.170)					14.946 (0.060)					13.160 (0.106)
Monthly income JOD	<500	52.2	43.8	2.5	1.5	0.0	54.2	41.9	3.4	0.5	0.0	52.7	42.4	3.9	0.5	0.5	52.7	37.8	5.0	3.5	1.0
	500–1000	50.0	45.3	3.4	1.4	0.0	55.7	38.9	5.4	0.0	0.0	49.0	44.3	6.7	0.0	0.0	55.7	34.2	5.4	3.4	1.3
	>1000	55.0	41.3	3.7	0.0	0.0	59.6	33.0	6.4	0.9	0.0	52.8	41.7	3.7	1.9	0.0	58.7	33.0	7.3	0.9	0.0
	χ^2 (P-value)	2.521 (0.866)					4.536 (0.604)					6.816 (0.557)					4.981 (0.760)

Figure 1 Participants' perspectives on open consent model.

Table 2 Participants’ Perspectives On Continuous Contact Regarding Their Storage Samples

Perspectives On Continuous Contact With Participants (%)		Continuous Contact With Participants Regarding Their Stored Sample Might Put Additional Strain On Researchers			Continuous Contact With Participants Regarding Their Stored Sample Might Be Inconvenient To Participants								Continuous Contact With Participants Regarding Their Stored Sample Might Increase The Likelihood Of Disclosure Of Participants’ Information
		Strongly Agree	Agree	Neutral	Disagree	Strongly Disagree	Strongly Agree	Agree	Neutral	Disagree	Strongly Disagree	Strongly Agree	Agree	Neutral	Disagree	Strongly Disagree
Gender	Female	27.9	37.3	20.9	12.3	1.6	18.9	28.7	28.7	19.7	4.1	23.8	39.8	27.5	7.8	1.2
	Male	31.2	38.5	17.6	10.0	2.7	22.1	38.3	20.7	14.4	4.5	24.5	44.5	23.2	5.5	2.3
	χ^2 (P-value)		2.31 (0.679)					8.69 (0.069)					3.16 (0.531)
Age (years)	18–29	28.8	36.0	21.6	10.8	2.9	20.5	30.2	25.9	19.1	4.3	25.9	39.2	26.3	7.2	1.4
	30–39	33.7	33.7	18.5	13.0	1.1	23.7	31.2	25.8	15.1	4.3	23.9	41.3	27.2	6.5	1.1
	40 and Over	26.6	47.9	13.8	10.6	1.1	16.0	44.7	21.3	13.8	4.3	18.3	51.6	21.5	5.4	3.2
	χ^2 (P-value)		8.28 (0.406)					8.03 (0.430)					6.90 (0.547)
Education level (degree)	High school	35.7	35.7	7.1	21.4	0.0	14.3	57.1	14.3	10.7	3.6	14.3	53.6	32.1	0.0	0.0
	Undergraduate	29.1	39.6	20.3	9.5	1.6	21.8	30.9	26.8	16.7	3.8	26.0	39.4	25.7	7.6	1.3
	Graduate	28.6	33.6	20.2	13.4	4.2	17.6	34.5	22.7	19.3	5.9	21.0	46.2	23.5	5.9	3.4
	χ^2 (P-value)		10.92 (0.206)					10.52 (0.230)					9.75 (0.282)
Residence	Town	35.0	30.1	18.4	16.5	0.0	26.2	31.1	23.3	15.5	3.9	28.4	40.2	26.5	4.9	0.0
	City	28.2	39.8	20.3	9.4	2.3	17.6	35.6	24.3	18.0	4.5	22.2	44.7	22.9	7.9	2.3
	Capital	27.7	40.4	17.0	10.6	4.3	22.3	28.7	27.7	17.0	4.3	25.5	37.2	29.8	5.3	2.1
	χ^2 (P-value)		3.124					0.926					2.759
Monthly income (JOD)	<500	32.2	35.6	18.3	10.4	3.5	23.2	28.6	28.1	15.3	4.9	25.2	40.1	28.2	5.0	1.5
	500–1000	26.4	41.2	18.9	13.5	0.0	17.6	35.8	25.7	16.9	4.1	23.1	43.5	23.8	8.2	1.4
	>1000	28.4	38.5	20.2	10.1	2.8	19.3	38.5	17.4	21.1	3.7	23.9	43.1	22.9	7.3	2.8
	χ^2 (P-value)		7.71 (0.462)					8.97 (0.345)					3.79 (0.875)
Prior participation in research	Yes	33.5	34.9	17.7	13.0	0.9	22.2	30.1	23.6	20.4	3.7	25.1	42.8	24.2	7.0	0.9
	No	26.3	41.8	19.8	9.5	2.6	19.4	36.2	25.9	13.4	5.2	24.2	41.1	26.4	5.6	2.6
	Refused	18.8	18.8	37.5	12.5	12.5	6.3	31.3	31.3	31.3	0.0	6.3	50.0	25.0	18.8	0.0
	χ^2 (P-value)		19.54 (0.012*)					10.15 (0.254)					8.70 (0.368)

Notes: * Significant at P < 0.05.

Table 3 Participants’ Perspectives On Adding Specific Options To The Open Consent Form

	Clarification About Storage Period Of Samples	Clarification About Sample-Sharing With International Centers	Options For Sample Usage After Death	Options To Restrict Future Use Of Samples To A List Of Specific Diseases	Two Options Regarding Preferable Consent Model
Cumulative %	87.4	82.4	79.9	65.7	81.6
Gender
Female	83.1	86	83	69.2	85.6*
Male	73.4	78.5	76	62.1	77.3
Age (years)
18–29	75.6	80.5	78.3	65.5	80.2
30–39	83.4	81.6	82.5	64.9	84.9
40 and Over	82	88.4*	80.6	67	82.1
Education level (degree)
High school	77.8	66.6	70.3	74.1	85.7
Undergraduate	78.8	83.9	80.1	65.7	80.2
Graduate	77.3	81.5	80.3	63.3	84.2
Residence
Town	73.8	80.8	76.7	58.8	71.9
City	81.5	83.5	81.8	67.8	82.8
Capital	75.5	80.4	77.4	66.7	89.3*
Monthly income (JOD)
<500	73.8	79.2	76.1	63.7	82.7
500–1000	80.3	87.1	81	69	79.2
>1000	83.4	80.7	83.4	64.2	83.5
Prior participation in research
Yes	78.6	82.9	80.8	65	84.8
No	77.9	82.3	79.1	66.8	78.4
Refused	87.6	81.3	75.1	62.5	87.6
Knowledge of consent important
Yes	76.5	80.8	77.3	65.9	80.3
No	80.7	84.7	82.8	63.9	81.9

Note: *Significant at P<0.05.

Table 4 Factors Affecting Participants’ Willingness To Accept The Open Consent Model

Factors Correlated Positively With Participants’ Willingness To Give Open Consent	rs (P)	Factors Correlated Negatively With Participants’ Willingness To Give Open Consent	rs (P)	Factors Uncorrelated With Participants’ Willingness To Give Open Consent	rs (P)
Re-contacting participants before each use of their samples may be an inconvenience to participants	0.379**	Fear of the negative effects of research on privacy and confidentiality	−0.218**	Obtaining open consent may not show enough respect to participants	−0.048 (0.305)
I trust medical researchers to use/reuse my health information or biological samples	0.356**	Exact study purpose is not well defined	−0.153**	Obtaining open consent may not adequately protect the rights of participants	−0.016 (0.727)
Re-contacting participants before each use of their samples may put additional strain on researchers	0.293**	Unknown storage period of samples	−0.127*	Obtaining open consent may not give participants adequate control over future uses of the samples	0.036 (0.44)
Continuous contact with biospecimen donors increases the likelihood of disclosure of participants’ information	0.292**	Possibility of transferring samples to another country	−0.119*	Obtaining open consent may not give participants adequate information to give meaningful consent
Support for establishment of biobanks in Jordan	0.222**

Notes: *Statistically significant at P<0.01. **Statistically significant at P<0.001.