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. 2017 May 10;25(7):801–808. doi: 10.1038/ejhg.2017.64

Table 3. Concerns about the use of WGS in clinical practice by Profile.

Profile Aa Profile Bb
Factor 1: Patients and proxies Factor 1: Potential adverse effects for patients and proxies, and medical professionals
 1. Inform patient’s relatives about their own genetic risks  1. Patients’/proxies’ difficulties in understanding the results
 2. Patients’/proxies’ difficulties in understanding the results  2. Issues raised by the management of unexpected findings
 3. Need for further genetic testing of family members for appropriate interpretation of results  3. Risk of discrimination or stigmatization of patients or their family members
 4. Need to re-contact patients to inform them about newly discovered mutations linked to their neurological condition  4. Inform patient’s relatives about their genetic risks
   5. Need to re-contact patients to inform them about newly discovered mutations linked to their neurological condition
Factor 2: Lack of resources Factor 2: Lack of resources
 1. Lack of access to/availability of the test  1. Potential for causing emotional harm to patients or proxies
 2. Cost/lack of insurance coverage and reimbursement  2. Lack of time and resources to educate/inform patients/proxies about the test and its results
 3. Lack of specific clinical guidelines to use WGS in practice  3. Lack of specific clinical guidelines to use WGS in practice
 4. Obligations to follow overly constrictive professional guidelines that could limit choices in practice  4. Obligations to follow overly constrictive professional guidelines that could limit choices in the practice
 5. Lack of time and resources (eg, genetic counselling) to educate/inform patients/proxies about the test and its results  5. Lack of access to/availability of the test
   6. Costs/lack of insurance coverage and reimbursement
Factor 3: Potential adverse effects for patients and medical professionals  
 1. Professional liability for adverse outcomes that might occur as a result of returning (or not) the test findings  
 2. Risk of discrimination or stigmatization of patients or their family members  
 3. Potential for causing emotional harm to patients or proxies (anxiety, guilt, etc.)  
a

Concerns about WGS were characterized by a three factors explaining 74.90% of the total variance: concerns for patients’ proxies (28.11%), lack of resources (26.80%) and potential for adverse effects (19.99%)

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b

Concerns about WGS were characterized by two factors – explaining 83.32% of the total variance – including potential adverse effects (53.64%), and lack of resources (29.68%).