Center for Corporate Auditing, Responsibility and Management policy Authoring/Prevention of genetic diseases policy
—Mater et Magistra, Science in the Service of Life; Pope John XXIII
Prevention of genetic diseases policy
—The Philosophy Gym, Stephen Law
This policy is meant to guarantee genetic testing to employees of a company as a measure to support the health and well-being of the employees and their families. The policy is also meant to guarantee that the employer will not attempt to use genetic information of employees for the purposes of the company, unless a purpose is explicitly listed as an exception to this policy. The current version offers no such exceptions.
A genetic testing kit in the sense of this policy is a testing kit offered by a qualified company that tests for the list of genetic diseases given in this policy.
Welfare and corporate volunteering
- Companies that fully implement this policy are required to donate one genetic testing kit to an African clinic for every testing kit purchased for an employee.
Medical data protection
- The interaction with the genetic screening company is private and communication concerning a single genetic test is addressed to the privat address of the employee or his family doctor (but no other physician) exclusively.
- The company refrains from accessing the genetic information in any way or attempting to order the employee to reveal any information from the genetic test.
- Should the company make any such request this policy recommends that the employee should bring this to the attention of a whistleblowing organization or forum immediately.
- This policy obligates the company to offer the employee adequate information for understanding genetic diseases. The circumstances of the educational measures can be decided by the company and may depend on the educational background of the employee but the result should be that the employee is able to understand the result of the genetic testing at an adequate level given his personal educational background.
List of genetic diseases
This list of genetic diseases has been copied from https://www.23andme.com/prospective-parents/inherited-conditions/. While this would currently favor 23andme.com as the service provider the list can be changed and future versions may be more oriented towards preventing specific diseases.
- Agenesis of the Corpus Callosum with Peripheral Neuropathy (ACCPN)
- Alpha-1 Antitrypsin Deficiency
- Autosomal Recessive Polycystic Kidney Disease
- Bloom's Syndrome
- Canavan Disease
- Congenital Disorder of Glycosylation Type 1a (PMM2-CDG)
- Connexin 26-Related Sensorineural Hearing Loss
- Cystic Fibrosis
- D-Bifunctional Protein Deficiency
- DPD Deficiency
- Dihydrolipoamide Dehydrogenase Deficiency
- Factor XI Deficiency
- Familial Dysautonomia
- Familial Hypercholesterolemia Type B
- Familial Hyperinsulinism (ABCC8-related)
- Familial Mediterranean Fever
- Fanconi Anemia (FANCC-related)
- G6PD Deficiency
- GRACILE Syndrome
- Gaucher Disease
- Glycogen Storage Disease Type 1a
- Glycogen Storage Disease Type 1b
- Hypertrophic Cardiomyopathy (MYBPC3 25bp-deletion)
- LAMB3-related Junctional Epidermolysis Bullosa
- Limb-girdle Muscular Dystrophy
- Maple Syrup Urine Disease Type 1B
- Medium-Chain Acyl-CoA Dehydrogenase (MCAD) Deficiency
- Mucolipidosis IV
- Neuronal Ceroid Lipofuscinosis (CLN5-related)
- Neuronal Ceroid Lipofuscinosis (PPT1-related)
- Niemann-Pick Disease Type A
- Nijmegen Breakage Syndrome
- Pendred Syndrome
- Primary Hyperoxaluria Type 2 (PH2)
- Rhizomelic Chondrodysplasia Punctata Type 1 (RCDP1)
- Salla Disease
- Sickle Cell Anemia & Malaria Resistance
- Tay-Sachs Disease
- Torsion Dystonia
- Zellweger Syndrome Spectrum
See also: https://www.23andme.com/health/all/