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Explore the complexities of genetic counseling and confidentiality in the face of familial alcohol-related disorders. Dive into the ethical dilemmas as characters navigate the impact on relationships and offspring.
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Scene III: Stacy shares a secret Objectives: After this lesson, the student will be able to: Understand the importance of documenting family history in dealing with genetic disorders; Appreciate the confidential nature of medical information, especially as it relates to inherited conditions; Identify ethical/dilemmas posed by genetic counseling; and Discuss hereditary aspects of alcohol related disorders
Scene III: Stacy shares a secret Stacy claims that Martha had borrowed a sweater from her about 5 years ago, and when Martha returned it, there was a large hole in it. Martha claimed that the hole was there when she had borrowed the sweater. Stacy claimed that Martha put the hole in it. They have not spoken with each other since then. “Martha’s an alcoholic and can’t remember what she’s doing half the time. She only thinks of herself. I can’t be bothered with her.”
Scene III: Stacy shares a secret Stacy forbids the genetics center to release information to Martha about Stacy’s carrier status or Alan’s hemophilia. The genetics center has Martha’s address and phone number, but respects Stacy’s rights to confidentiality. However, the potential impact of this information on Martha’s offspring is significant. Paul refuses to get involved with the situation between Stacy and her sister. Despite several appeals to Stacy to authorize the release of critical information to her sister, Stacy refuses. The genetics center is about to discuss with its attorneys the best legal consequences of defying Stacy’s orders, when a possible solution to the dilemma is identified.
Scene III: Stacy shares a secret “Stacy, we have to respect your wishes not to discuss this information with Martha, but there is someone else we need to talk with. You wouldn’t mind if we called David? We need to be absolutely sure that he doesn’t have hemophilia.” Stacy agrees in writing to allow the genetics center to discuss details of Alan’s condition with David.
Scene III: Stacy shares a secret A review of David’s medical history assures the geneticist that David does not have hemophilia. “I’m not surprised that you don’t have hemophilia, David. If you were affected, you likely would have known it long before now.” David looked puzzled. “The real reason we asked you to come in was to see if you could help us get some information to Martha.” Details of Alan’s hemophilia is shared with David, who in turn contacts Martha and urges her to make an appointment at the genetics center, which she does. Testing reveals that Martha and two of her three daughters are carriers.
Scene III: Stacy shares a secret Martha makes it clear to the genetics center that Stacy is not to be told of the test results in Martha’s family. Asked why, she replies “My sister is jealous of everything I do. She’s always looking for something that she can use against me. She blamed me for our father being an alcoholic. Every time she saw me with a drink she’d remind me of what drinking did to Dad. Anyway, I’m really trying to cut down on my drinking. That witch tried to blame me for putting a hole in her lousy sweater. That was the last straw. I swore that I’d never talk to her again.” Further questioning reveals that two of Martha’s father’s brothers are also alcoholics. According to Martha, Stacy totally abstains from alcohol because she feels that with her family history, she is at high risk of becoming an alcoholic herself.
Alcohol Related Disorders • Two categories: • 1) Alcohol Abuse: pattern of constant intoxication, daily, blackouts, unsuccessful attempts to stop • 2) Alcohol Dependence (alcoholism): Alcohol abuse and increased tolerance or withdrawal symptoms • Becomes evident within first 5 years of drinking
What’s the leading cause of death in 15-24 year olds? Automobile accidents
Inheritance • Alcoholism often found in several generations of families • Multiple genes probably contribute • Genes & enzymes affect how alcohol is metabolized • Familial Alcoholism • Positive family history • Early onset (in the 30s) • More severe
Conclusion • Martha sighs, “Like I said, I’m really trying to cut down on my drinking, now that I’m pregnant…again.”