exposing the dark side of adoption
Register Log in
Homedocuments

Genetic Screening and the Adult Adoptee

⬤ public

There are medical issues that go with each child's family history, and not all family members may be forthcoming and honest when telling case-workers their stories in an adoption agency.  People can be funny that way.

To get a sense of how genetic diagnosing affects parents, consider the following from:

GENETIC SCREENING AND ETHICS AN OVERVIEW   By: David Devore
1992 Woodrow Wilson Biology Institute

http://www.woodrow.org/teachers/bi/1992/gen_screen1.html

TABLE 1

GENETIC DIAGNOSIS

I. Genetic diagnosis is currently available for the following:

  • sex
  • abnormal chromosome number
  • early onset conditions (e.g. sickle cell, cystic fibrosis)
  • late onset conditions (e.g. Huntington disease, polycystic kidney disease)
  • susceptibility to (e.g. hypercholesterol, alcoholism)
  • carriers of recessive genes (e.g. sickle cell, cystic fibrosis)

II. Inherited conditions in which DNA markers have been found:

  • polycystic kidney disease
  • agammaglobulinemia
  • Alzheimer disease
  • Charcot-Marie-Tooth polyneuropathy
  • Choroideremia
  • Dyskeratosis congentia
  • Emery-Dreifuss muscular dystrophy
  • Fragile X syndrome
  • Gonadal dysgenesis
  • Hemochromatosis Wilms
  • Huntington chorea
  • Ichthyosis, X-linked
  • Myotonic dystrophy
  • neurofibromatosis
  • Norrie disease
  • Retinitis pigmentosa
  • retinoschisis
  • severe combined immunodeficiency
  • tumor aniridia

III. Inherited disorders in which disease gene locus has been identified:

  • acatalasemia
  • adenosine deaminase deficiency
  • adrenoleukodystrophy
  • amyloid polyneuropathy
  • antithrombin III deficiency
  • alpha 1-antitrypsin deficiency
  • apolipoprotein A1 deficiency
  • Becker muscular dystrophy
  • Carbonic anhydrase II deficiency
  • Chronic granulomatous
  • Citrullinemia
  • Congenital adrenal hyperplasia
  • Cystic fibrosis
  • Dihydropteridine reductase deficiency
  • Duchenne muscular dystrophy
  • Ehlers-Danlos syndrome
  • Familial hypercholesterolemia
  • Tay-Sachs disease
  • Hemophilia A
  • Hemophilia B
  • Homocystinuria
  • Growth hormone deficiency
  • Lesch-Nyhan syndrome
  • Maple syrup urine disease
  • Osteogenesis imperfecta
  • Fabry disease
  • Phenylketonuria
  • Porphyria
  • Propionyl-CoA carboxylase deficiency
  • Purine nucleoside
  • phosphorylase deficiency
  • Pyruvate kinase deficiency
  • Retinoblastoma
  • Sickle cell anemia
  • alpha, beta Thalassemia

[Adapted from Harry Ostrer and J. Feilding Hejtmancik, " Prenatal diagnosis and carrier detection of genetic diseases by analysis of deoxyribosenucleic acid," Journal of Pediatrics 112(5):679-687.]

TABLE 2

PREVALENCE OF SOME GENETIC DISEASES

Estimates of the number of Americans having diseases with a genetic cause or an important genetic component

Disease

 Incidence Nature of Illness
polycystic kidney disease 400,000 kidney damage, failure
Down's syndrome 250,000 range of mental retardation
Sickle-cell anemia 50,000 impaired circulation, anemia
Cystic fibrosis 30,000 chronic respiratory and digestive problems
Huntington's disease 25,000 progressive mental and neurological degeneration
Duchenne muscular dystrophy 30,000 muscle degeneration
Hemophilia 20,000 uncontrolled bleeding
Phenylketonuria 10,000 mental deficiency
Alzhemier's disease 2-4 million mental degeneration

Source: Office of Technology Assessment

"Individual states in the United States finance their newborn screening programs in different ways. Most states collect a fee for screening, which ranges from less than $15 to nearly $60 per newborn. Health insurance or other programs can pay this fee for the newborn's parents."  http://learn.genetics.utah.edu/units/disorders/newborn/

But what about the adoptee who has no basic or correct medical history information?

My question is, in who's best health interest is genetic testing?

News paper article
2007 Aug 7
adult adoptees, medical conditions, medical ethics, medical history, genetic screening